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European Patient Group Directory 2008

Publisher:

Author:

Burson-Marsteller 37 Square de Meeûs B-1000 Brussels Belgium Tel: 0032-(0)2-743-66-11 email: robert.mack@bm.com http://www.bmbrussels.eu

PatientView Woodhouse Place Upper Woodhouse Knighton, Powys LD7 1NG Wales Tel: 0044-(0)1547-520-965 email: info@patient-view.com http://www.patient-view.com

Media Partner: European Voice International Press Centre Résidence Palace Rue de la Loi 155, Box 6 1040 Brussels Belgium Tel: 0032-(0)2-540-90-90 email: info@europeanvoice.com http://www.europeanvoice.com

Copyright © Burson-Marsteller / PatientView 2008 Any part of this document may be used for non-commercial purposes, as long as the source is acknowledged. For any queries regarding reproduction of this publication, please contact either Burson-Marsteller or PatientView. Use in a library Should you be using this Directory in a library, please note that it remains protected by copyright. All restrictions imposed on the use of this Directory continue to apply. Limited liability The author and publisher of this Directory (and their agents) offer no warranty as to the accuracy or suitability of this publication for any purpose. Although due care has been given to ensuring the validity of the data published in this Directory, the author and publisher can accept no responsibility or liability for any losses or damages of any kind, however so arising from actions taken, or based upon, the contents of this publication. The author and publisher reserve the right to change the design, contents, and layout of the Directory, should they consider this action appropriate.

EUROPEAN PATIENT GROUP DIRECTORY 2008 © BURSON-MARSTELLER / PATIENTVIEW

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European Patient Group Directory 2008

Contents INDEXES

PAGES I-XIX

A-Z LIST OF SPECIALISATIONS A-Z LIST OF ENTRIES A-Z LIST OF ACRONYMS

FOREWORD FROM THE PUBLISHER

PAGE XX

FOREWORD FROM THE AUTHOR

PAGES XXI-XXII

KEY TO DATA

PAGE XXIII

ENTRIES IN ALPHABETICAL ORDER

PAGES 1-172

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European Patient Group Directory 2008

Indexes 172 PAN-EUROPEAN PATIENT, CARERS’, CHILDREN’S, CONSUMER, DISABILITY,

OLDER PEOPLE’S, AND OTHER GROUPS WITH AN INTEREST IN SOME ELEMENT OF HEALTH ADVOCACY

A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

A-Z List of Specialisations Assigning specialisations to the organisations in this Directory is subjective. Certain groups straddle several activities (and have been listed under more than one specialty). Some groups may not agree with their categorisation. Therefore, this contents list of specialties can only be an approximate guide.

ADDICTION Page Page Page Page Page Page

22. Correlation 29. Eurasian Harm Reduction Network 32. Eurocare 106. European Network for Smoking Prevention 108. European Network of Quitlines 169. Smoke Free Partnership

ARTHRITIS Page 96. European League Against Rheumatism Page 103. European Network for Children with Arthritis

AUTO IMMUNE / IMMUNE DISEASES Page 9. Association of European Coeliac Societies Page 18. Coeliac Youth of Europe Page 47. European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders Page 99. European Lupus Erythematosus Federation Page 147. International Association for Autoimmune Disease Page 152. International Patient Organisation for Primary Immunodeficiencies

BLOOD DISORDERS Page Page Page Page Page Page

5. AntiCoagulation Europe 73. European Federation of Associations of Patients with Haemochromatosis 87. European Haemophilia Consortium 104. European Network for Rare and Congenital Anaemias 165. Pan-European Blood Safety Alliance 172. Thalassaemia International Federation

BONE Page 151. International Osteoporosis Foundation

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European Patient Group Directory 2008

Index A-Z List of Specialisations A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

CANCER Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page

8. Association of European Cancer Leagues 17. CML Advocates Network 21. CONTICANET 24. Das Lebenshaus e.V. 38. EUROPA DONNA—the European Breast Cancer Coalition 39. Europa Uomo 40. Europacolon 52. European CanCer Organisation 53. European Cancer Patient Coalition 54. European Cervical Cancer Association 102. European Myeloma Platform 133. Global Lung Cancer Coalition 148. International Brain Tumour Alliance 155. Leukämie-Online e.V. 156. Lymphoma Coalition 159. Myeloma Euronet 161. Nordic Cancer Union

CARERS Page 33. Eurocarers Page 83. European Federation of Unpaid Parents and Carers at Home

CHILDREN Page Page Page Page Page Page

34. Eurochild 44. European Association for Children in Hospital 55. European Children’s Network 80. European Federation of Parents of Hearing-Impaired Children 103. European Network for Children with Arthritis 105. European Network for Research on Alternating Hemiplegia in Childhood

CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE Page Page Page Page Page Page

1. Active Citizenship Network 14. Bureau Européen des Unions de Consommateurs 27. EU Civil Society Contact Group 59. European Community of Consumer Co-operatives 77. European Federation of National Organisations working with the Homeless 134. Health Action International–Europe

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European Patient Group Directory 2008

Index A-Z List of Specialisations A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

COMPLEMENTARY / ALTERNATIVE MEDICINES Page 76. European Federation of Homeopathic Patients’ Associations Page 81. European Federation of Patients’ Associations for Anthroposophic Medicine

DIABETES Page 150. International Diabetes Federation–European Region

DISABILITY Page 7. Association for Research and Training on Integration in Europe Page 19. Confederation of European social Firms, Employment initiatives and social Co-operatives Page 26. Disabled Peoples’ International–Europe Page 28. Eucrea International Page 46. European Association of Cochlear Implant Users Page 48. European Association of Service Providers for Persons with Disabilities Page 49. European Blind Union Page 57. European Coalition for Community Living Page 62. European Deafblind Network Page 63. European Disability Forum Page 71. European Federation of Associations of Burned Persons Page 75. European Federation of Hard of Hearing People Page 80. European Federation of Parents of Hearing-Impaired Children Page 97. European League of Stuttering Associations Page 109. European Network on Independent Living Page 123. European Society for Mental Health and Deafness Page 125. European Union of the Deaf Page 30. Euro Tinnitus Association Page 138. Hear-it AISBL Page 144. Information Society Open to ImpairmentS Page 167. Retina International

ENDOCRINE Page 141. Hypoparathyroidism Europe

FAMILIES AND HEALTH Page Page Page Page Page

20. 68. 72. 80. 83.

Confederation of Family Organisations in the European Union European Family Therapy Association European Federation of Associations of Families of People with Mental Illness European Federation of Parents of Hearing-Impaired Children European Federation of Unpaid Parents and Carers at Home

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European Patient Group Directory 2008

Index A-Z List of Specialisations A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

GASTRO-INTESTINAL Page 74. European Federation of Crohn’s and Ulcerative Colitis Associations Page 113. European Ostomy Associations

GENDER HEALTH Page 93. European Institute of Women’s Health Page 100. European Men’s Health Forum

GENERAL HEALTHCARE Page Page Page Page Page Page Page Page

116. 117. 118. 136. 137. 142. 146. 170.

European Patients Empowerment for Customised Solutions European Patients’ Forum European Platform for Patients’ Organisations, Science and Industry Health Care Without Harm Europe Health First Europe Iatrogenic Europe Unite International Alliance of Patients’ Organizations Stichting Iatrogenic Europe Unite-Alliance

GENETIC / RARE DISEASES Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page

3. Alfa Europe Federation e.V. 12. Barth Syndrome Trust 23. Cystic Fibrosis Europe 25. DebRA Europe 31. Euro-Ataxia 35. Eurochromnet 56. European Chromosome 11q Network 64. European Down Syndrome Association 69. European Federation for Neurofibromatosis Associations 84. European Galactosaemia Society 85. European Gaucher Alliance 86. European Genetic Alliances Network 92. European Huntington’s Disease Network 124. European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria 128. Eurordis 129. Fabry International Network 130. Federation of European Williams Syndrome associations 163. ORPHANET 164. Osteogenesis Imperfecta Federation Europe 168. Rett Syndrome Europe

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Index A-Z List of Specialisations A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

HEART DISEASE / CIRCULATORY Page Page Page Page Page Page

6. Arrhythmia Alliance (the Heart Rhythm Charity) 61. European Congenital Heart Disease Organisation 90. European Heart and Lung Transplant Federation 91. European Heart Network 139. HEART EU 171. Stroke Alliance for Europe

HIV/AIDS Page Page Page Page Page

2. AIDS Action Europe 29. Eurasian Harm Reduction Network 41. European AIDS Treatment Group 58. European Coalition of Positive People 145. International AIDS Vaccine Initiative–Europe

INFECTIOUS [Includes HIV/AIDS entries, above] Page 119. European Polio Union Page 166. Polio Initiative Europa e.V. LEARNING DISABILITY Page 11. Autism-Europe Page 65. European Dyslexia Association Page 143. Inclusion Europe

LIVER DISEASE Page 98. European Liver Patients Association

MENTAL HEALTH Page Page Page Page Page Page Page Page Page Page Page

36. Euro-Methwork 72. European Federation of Associations of Families of People with Mental Illness 107. European Network of (Ex-) Users and Survivors of Psychiatry 121. European Regional Network for User-Led Projects 123. European Society for Mental Health and Deafness 127. Euro-Psy-Rehabilitation 131. GAMIAN-Europe 157. Mental Disability Advocacy Center 158. Mental Health Europe – Santé Mentale Europe 160. National Suicide Bereavement Support Network 162. Open Society Mental Health Initiative

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Index A-Z List of Specialisations A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

NEUROLOGICAL CONDITIONS Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page Page

4. Alzheimer Europe 13. Brain Injured and Families European Confederation 15. Cerebral Palsy-European Communities Association 43. European Alliance of Neuro-Muscular Disorders Association 50. European Brain Council 51. European Brain Injury Society 60. European Concerted Action and Research in Epilepsy 66. European Dystonia Federation 78. European Federation of Neurological Associations 88. European Headache Alliance 92. European Huntington’s Disease Network 101. European Multiple Sclerosis Platform 105. European Network for Research on Alternating Hemiplegia in Childhood 110. European Neuro Muscular Centre 114. European Pain Network 115. European Parkinson’s Disease Association 149. International Bureau for Epilepsy-Europe

OLDER PEOPLE Page Page Page Page Page

79. European Federation of Older Persons 89. European Healthy Ageing Advocacy Forum 112. European Older People’s Platform, The 140. HelpAge International 144. Information Society Open to ImpairmentS

PUBLIC HEALTH Page Page Page Page Page Page Page Page Page Page Page Page Page Page

16. Club Européen de la Santé 22. Correlation 29. Eurasian Harm Reduction Network 32. Eurocare 37. EuroNGOs 42. European Alliance for Access to Safe Medicines 45. European Association for Injury Prevention and Safety Promotion 89. European Healthy Ageing Advocacy Forum 108. European Network of Quitlines 106. European Network for Smoking Prevention 11. European Nutrition for Health Alliance 120. European Public Health Alliance 135. Health and Environment Alliance 154. International Union for Health Promotion and Education/European Region

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Index A-Z List of Specialisations A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

Page 165. Pan-European Blood Safety Alliance Page 169. Smoke Free Partnership

RENAL Page 94. European Kidney Health Alliance Page 95. European Kidney Patients’ Federation

REPRODUCTIVE / SEXUAL HEALTH Page Page Page Page Page Page Page

10. ASTRA 67. European Endometriosis Alliance 37. EuroNGOs 122. European Sexual Dysfunction Alliance 126. European Youth Network on Sexual and Reproductive Rights 132. Global Campaign for Microbicides 153. International Planned Parenthood Federation European Network

RESPIRATORY Page 70. European Federation of Allergy and Airways Diseases Patients Associations Page 90. European Heart and Lung Transplant Federation

SKIN Page 82. European Federation of Psoriasis Associations

YOUTH Page 18. Coeliac Youth of Europe Page 126. European Youth Network on Sexual and Reproductive Rights

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European Patient Group Directory 2008

Indexes 172 PAN-EUROPEAN PATIENT, CARERS’, CHILDREN’S, CONSUMER, DISABILITY,

OLDER PEOPLE’S, AND OTHER GROUPS WITH AN INTEREST IN SOME ELEMENT OF HEALTH ADVOCACY

A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

A-Z List of Entries A Active Citizenship Network … Page 1 AIDS Action Europe … Page 2 Alfa Europe Federation e.V. … Page 3 Alzheimer Europe … Page 4 AntiCoagulation Europe … Page 5 Arrhythmia Alliance (the Heart Rhythm Charity) … Page 6 Association for Research and Training on Integration in Europe … Page 7 Association of European Cancer Leagues … Page 8 Association of European Coeliac Societies … Page 9 ASTRA … Page 10 Autism-Europe … Page 11

B Barth Syndrome Trust … Page 12 Brain Injured and Families European Confederation … Page 13 Bureau Européen des Unions de Consommateurs … Page 14

C Cerebral Palsy-European Communities Association ��� Page 15 Club Européen de la Santé … Page 16 CML Advocates Network … Page 17 Coeliac Youth of Europe … Page 18 Confederation of European social Firms, Employment initiatives and social Cooperatives … Page 19 Confederation of Family Organisations in the European Union … Page 20 CONTICANET … Page 21 Correlation … Page 22 Cystic Fibrosis Europe … Page 23

D Das Lebenshaus e.V. … Page 24 DebRA Europe … Page 25 Disabled Peoples’ International-Europe … Page 26

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Index A-Z List of Entries A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

E EU Civil Society Contact Group … Page 27 Eucrea International … Page 28 Eurasian Harm Reduction Network … Page 29 Euro Tinnitus Association … Page 30 Euro-Ataxia … Page 31 Eurocare … Page 32 Eurocarers … Page 33 Eurochild … Page 34 Eurochromnet … Page 35 Euro-Methwork … Page 36 EuroNGOs … Page 37 EUROPA DONNA—the European Breast Cancer Coalition … Page 38 Europa Uomo … Page 39 Europacolon … Page 40 European AIDS Treatment Group … Page 41 European Alliance for Access to Safe Medicines … Page 42 European Alliance of Neuro-Muscular Disorders Association … Page 43 European Association for Children in Hospital … Page 44 European Association for Injury Prevention and Safety Promotion … Page 45 European Association of Cochlear Implant Users … Page 46 European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders … Page 47 European Association of Service Providers for Persons with Disabilities … Page 48 European Blind Union … Page 49 European Brain Council … Page 50 European Brain Injury Society … Page 51 European CanCer Organisation … Page 52 European Cancer Patient Coalition … Page 53 European Cervical Cancer Association … Page 54 European Children’s Network … Page 55 European Chromosome 11q Network … Page 56 European Coalition for Community Living … Page 57 European Coalition of Positive People … Page 58 European Community of Consumer Co-operatives … Page 59 European Concerted Action and Research in Epilepsy … Page 60 European Congenital Heart Disease Organisation … Page 61 European Deafblind Network … Page 62 European Disability Forum … Page 63 European Down Syndrome Association … Page 64 European Dyslexia Association … Page 65

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European Patient Group Directory 2008

Index A-Z List of Entries A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

European Dystonia Federation … Page 66 European Endometriosis Alliance … Page 67 European Family Therapy Association … Page 68 European Federation for Neurofibromatosis Associations … Page 69 European Federation of Allergy and Airways Diseases Patients Associations … Page 70 European Federation of Associations of Burned Persons … Page 71 European Federation of Associations of Families of People with Mental Illness … Page 72 European Federation of Associations of Patients with Haemochromatosis … Page 73 European Federation of Crohn’s and Ulcerative Colitis Associations … Page 74 European Federation of Hard of Hearing People … Page 75 European Federation of Homeopathic Patients’ Associations … Page 76 European Federation of National Organisations working with the Homeless … Page 77 European Federation of Neurological Associations … Page 78 European Federation of Older Persons … Page 79 European Federation of Parents of Hearing-Impaired Children … Page 80 European Federation of Patients’ Associations for Anthroposophic Medicine … Page 81 European Federation of Psoriasis Associations … Page 82 European Federation of Unpaid Parents and Carers at Home … Page 83 European Galactosaemia Society … Page 84 European Gaucher Alliance … Page 85 European Genetic Alliances Network … Page 86 European Haemophilia Consortium … Page 87 European Headache Alliance … Page 88 European Healthy Ageing Advocacy Forum … Page 89 European Heart and Lung Transplant Federation … Page 90 European Heart Network … Page 91 European Huntington’s Disease Network … Page 92 European Institute of Women’s Health … Page 93 European Kidney Health Alliance … Page 94 European Kidney Patients’ Federation … Page 95 European League Against Rheumatism … Page 96 European League of Stuttering Associations … Page 97 European Liver Patients Association … Page 98 European Lupus Erythematosus Federation … Page 99 European Men’s Health Forum … Page 100 European Multiple Sclerosis Platform … Page 101 European Myeloma Platform … Page 102 European Network for Children with Arthritis … Page 103

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European Patient Group Directory 2008

Index A-Z List of Entries A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

European Network for Rare and Congenital Anaemias … Page 104 European Network for Research on Alternating Hemiplegia in Childhood … Page 105 European Network for Smoking Prevention … Page 106 European Network of (Ex-) Users and Survivors of Psychiatry … Page 107 European Network of Quitlines … Page 108 European Network on Independent Living … Page 109 European Neuro Muscular Centre … Page 110 European Nutrition for Health Alliance … Page 11 European Older People’s Platform, The … Page 112 European Ostomy Associations … Page 113 European Pain Network … Page 114 European Parkinson’s Disease Association … Page 115 European Patients Empowerment for Customised Solutions … Page 116 European Patients’ Forum … Page 117 European Platform for Patients’ Organisations, Science and Industry … Page 118 European Polio Union … Page 119 European Public Health Alliance … Page 120 European Regional Network for User-Led Projects … Page 121 European Sexual Dysfunction Alliance … Page 122 European Society for Mental Health and Deafness … Page 123 European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria … Page 124 European Union of the Deaf … Page 125 European Youth Network on Sexual and Reproductive Rights … Page 126 Euro-Psy-Rehabilitation … Page 127 Eurordis … Page 128

F Fabry International Network … Page 129 Federation of European Williams Syndrome associations … Page 130

G GAMIAN-Europe … Page 131 Global Campaign for Microbicides … Page 132 Global Lung Cancer Coalition … Page 133

H Health Action International–Europe … Page 134 Health and Environment Alliance … Page 135 Health Care Without Harm Europe … Page 136

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Index A-Z List of Entries A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

Health First Europe … Page 137 Hear-it AISBL … Page 138 HEART EU … Page 139 HelpAge International … Page 140 Hypoparathyroidism Europe … Page 141

I Iatrogenic Europe Unite … Page 142 Inclusion Europe … Page 143 Information Society Open to ImpairmentS … Page 144 International AIDS Vaccine Initiative-Europe … Page 145 International Alliance of Patients’ Organizations … Page 146 International Association for Autoimmune Disease … Page 147 International Brain Tumour Alliance … Page 148 International Bureau for Epilepsy-Europe … Page 149 International Diabetes Federation-European Region … Page 150 International Osteoporosis Foundation … Page 151 International Patient Organisation for Primary Immunodeficiencies … Page 152 International Planned Parenthood Federation European Network … Page 153 International Union for Health Promotion and Education/European Region … Page 154

L Leukämie-Online e.V. … Page 155 Lymphoma Coalition … Page 156

M Mental Disability Advocacy Center … Page 157 Mental Health Europe – Santé Mentale Europe … Page 158 Myeloma Euronet … Page 159

N National Suicide Bereavement Support Network … Page 160 Nordic Cancer Union … Page 161

O Open Society Mental Health Initiative … Page 162 ORPHANET … Page 163 Osteogenesis Imperfecta Federation Europe … Page 164

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Index A-Z List of Entries A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

P Pan-European Blood Safety Alliance … Page 165 Polio Initiative Europa e.V. … Page 166

R Retina International … Page 167 Rett Syndrome Europe … Page 168

S Smoke Free Partnership … Page 169 Stichting Iatrogenic Europe Unite-Alliance … Page 170 Stroke Alliance for Europe … Page 171

T Thalassaemia International Federation … Page 172

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European Patient Group Directory 2008

Indexes 172 PAN-EUROPEAN PATIENT, CARERS’, CHILDREN’S, CONSUMER, DISABILITY,

OLDER PEOPLE’S, AND OTHER GROUPS WITH AN INTEREST IN SOME ELEMENT OF HEALTH ADVOCACY

A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

A-Z List of Acronyms Organisations that do not appear to use an acronym (in the customary sense of the word) are gathered together at the end of this listing

A (AA), Arrhythmia Alliance (the Heart Rhythm Charity) … Page 6 (ACE), AntiCoagulation Europe … Page 5 (ACN), Active Citizenship Network … Page 1 (AE), Alzheimer Europe … Page 4 (A-E), Autism-Europe … Page 11 (AEF), Alfa Europe Federation e.V. … Page 3 (AGE), European Older People’s Platform, The … Page 112 (AOECS), Association of European Coeliac Societies … Page 9 (APAI), International Association for Autoimmune Disease … Page 147 (ARFIE), Association for Research and Training on Integration in Europe … Page 7

B (BEUC), Bureau Européen des Unions de Consommateurs [European Consumers Organisation] … Page 14 (BIF), Brain Injured and Families European Confederation … Page 13 (BST), Barth Syndrome Trust … Page 12

C (CEAPIR), European Kidney Patients’ Federation … Page 95 (CEFEC), Confederation of European social Firms, Employment initiatives and social Co-operatives … Page 19 (CES), Club Européen de la Santé … Page 16 (CFE), Cystic Fibrosis Europe … Page 23 (COFACE), Confederation of Family Organisations in the European Union … Page 20 (CP-ECA), Cerebral Palsy-European Communities Association … Page 15 (CYE), Coeliac Youth of Europe … Page 18

D (DPI-Europe), Disabled Peoples’ International-Europe … Page 26

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European Patient Group Directory 2008

Index A-Z List of Acronyms A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

E (EAASM), European Alliance for Access to Safe Medicines … Page 42 (EACH), European Association for Children in Hospital … Page 44 (EAMDA), European Alliance of Neuro-Muscular Disorders Association … Page 43 (EASPD), European Association of Service Providers for Persons with Disabilities … Page 48 (EATG), European AIDS Treatment Group … Page 41 (EBC), European Brain Council … Page 50 (EBIS), European Brain Injury Society … Page 51 (EBU), European Blind Union … Page 49 (ECCA), European Cervical Cancer Association … Page 54 (ECCL), European Coalition for Community Living … Page 57 (ECCO), European CanCer Organisation … Page 52 (ECHDO), European Congenital Heart Disease Organisation … Page 61 (ECL), Association of European Cancer Leagues … Page 8 (ECPC), European Cancer Patient Coalition … Page 53 (ECPP), European Coalition of Positive People … Page 58 (EDA), European Dyslexia Association … Page 65 (EDbN), European Deafblind Network … Page 62 (EDF), European Disability Forum … Page 63 (EDF), European Dystonia Federation … Page 66 (EDSA), European Down Syndrome Association … Page 64 (EEA), European Endometriosis Alliance … Page 67 (EFA), European Federation of Allergy and Airways Diseases Patients Associations … Page 70 (EFAB), European Federation of Associations of Burned Persons … Page 71 (EFAPH), European Federation of Associations of Patients with Haemochromatosis … Page 73 (EFCCA), European Federation of Crohn’s and Ulcerative Colitis Associations … Page 74 (EFHOH), European Federation of Hard of Hearing People … Page 75 (EFHPA), European Federation of Homeopathic Patients’ Associations … Page 76 (EFNA), European Federation of Neurological Associations … Page 78 (EFPAM), European Federation of Patients’ Associations for Anthroposophic Medicine … Page 81 (EFTA), European Family Therapy Association … Page 68 (EGAN), European Genetic Alliances Network … Page 86 (EGS), European Galactosaemia Society … Page 84 (EHA), European Headache Alliance … Page 88 (EHAAF), European Healthy Ageing Advocacy Forum … Page 89 (EHC), European Haemophilia Consortium … Page 87

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Index A-Z List of Acronyms A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

(EHDN), European Huntington’s Disease Network … Page 92 (EHLTF), European Heart and Lung Transplant Federation … Page 90 (EHN), European Heart Network … Page 91 (EHRN), Eurasian Harm Reduction Network … Page 29 (e-ISOTIS), Information Society Open to ImpairmentS … Page 144 (EIWH), European Institute of Women’s Health … Page 93 (EKHA), European Kidney Health Alliance … Page 94 (ELEF), European Lupus Erythematosus Federation … Page 99 (ELPA), European Liver Patients Association … Page 98 (ELSA), European League of Stuttering Associations … Page 97 (EMHF), European Men’s Health Forum … Page 100 (EMP), European Myeloma Platform … Page 102 (EMSP), European Multiple Sclerosis Platform … Page 101 (ENCA), European Network for Children with Arthritis … Page 103 (ENERCA), European Network for Rare and Congenital Anaemias … Page 104 (ENHA), European Nutrition for Health Alliance … Page 11 (ENIL), European Network on Independent Living … Page 109 (ENMC), European Neuro Muscular Centre … Page 110 (ENQ), European Network of Quitlines … Page 108 (ENRAH), European Network for Research on Alternating Hemiplegia in Childhood … Page 105 (ENSP), European Network for Smoking Prevention … Page 106 (ENUSP), European Network of (Ex-) Users and Survivors of Psychiatry … Page 107 (EOA), European Ostomy Associations … Page 113 (EPDA), European Parkinson’s Disease Association … Page 115 (EPECS), European Patients Empowerment for Customised Solutions … Page 116 (EPF), European Patients’ Forum … Page 117 (EPHA), European Public Health Alliance … Page 120 (EPN), European Pain Network … Page 114 (EPOS), European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders … Page 47 (EPPOSI), European Platform for Patients’ Organisations, Science and Industry … Page 118 (EPU), European Polio Union … Page 119 (ESDA), European Sexual Dysfunction Alliance … Page 122 (ESMHD), European Society for Mental Health and Deafness … Page 123 (E.S.PKU), European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria … Page 124 (EUCARE), European Concerted Action and Research in Epilepsy … Page 60 (EUD), European Union of the Deaf … Page 125 (EUFAMI ivzw), European Federation of Associations of Families of People with Mental Illness … Page 72

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European Patient Group Directory 2008

Index A-Z List of Acronyms A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

(EULAR), European League Against Rheumatism … Page 96 (EURAG), European Federation of Older Persons … Page 79 (Euro Coop), European Community of Consumer Co-operatives … Page 59 (EURO-CIU), European Association of Cochlear Implant Users … Page 46 (EURONET), European Children’s Network … Page 55 (EUROPSO), European Federation of Psoriasis Associations … Page 82 (EuroSafe), European Association for Injury Prevention and Safety Promotion … Page 45 (EuroTA), Euro Tinnitus Association … Page 30

F (FEANTSA), European Federation of National Organisations working with the Homeless … Page 77 (FEFAF), European Federation of Unpaid Parents and Carers at Home … Page 83 (FEPEDA), European Federation of Parents of Hearing-Impaired Children … Page 80 (FEWS), Federation of European Williams Syndrome associations … Page 130 (FIN), Fabry International Network … Page 129

G (GAMIAN-Europe), Global Alliance of Mental Illness Advocacy Networks -Europe … Page 131 (GCM), Global Campaign for Microbicides … Page 132 (GLCC), Global Lung Cancer Coalition … Page 133

H (HAI-Europe), Health Action International–Europe … Page 134 (HCWH Europe), Health Care Without Harm Europe … Page 136 (HEAL), Health and Environment Alliance … Page 135 (HEART EU), Hyperlipidemia, Education, Action, Research, and Treatment … Page 139 (HFE), Health First Europe … Page 137 (HPTH Europe), Hypoparathyroidism Europe … Page 141

I (IAPO), International Alliance of Patients’ Organizations … Page 146 (IAVI), International AIDS Vaccine Initiative-Europe … Page 145 (IBE), International Bureau for Epilepsy-Europe … Page 149 (IBTA), International Brain Tumour Alliance … Page 148 (IDF-Europe), International Diabetes Federation-European Region … Page 150

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European Patient Group Directory 2008

Index A-Z List of Acronyms A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

(IEU-Alliance), Iatrogenic Europe Unite … Page 142 (IOF), International Osteoporosis Foundation … Page 151 (IPOPI), International Patient Organisation for Primary Immunodeficiencies … Page 152 (IPPF EN), International Planned Parenthood Federation European Network … Page 153 (IUHPE/EURO), International Union for Health Promotion and Education /European Region … Page 154

M (MDAC), Mental Disability Advocacy Center … Page 157 (ME), Myeloma Euronet … Page 159 (MHE-SME), Mental Health Europe – Santé Mentale Europe … Page 158 (MHI), Open Society Mental Health Initiative … Page 162

N (NCU), Nordic Cancer Union … Page 161 (NF Europe), European Federation for Neurofibromatosis Associations … Page 69 (NSBSN), National Suicide Bereavement Support Network … Page 160

O (OIFE), Osteogenesis Imperfecta Federation Europe … Page 164

P (PBSA), Pan-European Blood Safety Alliance … Page 165 (PIE), Polio Initiative Europa e.V. … Page 166

R (RSE), Rett Syndrome Europe … Page 168

S (SAFE), Stroke Alliance for Europe … Page 171 (SFP), Smoke Free Partnership … Page 169

T (TIF), Thalassaemia International Federation … Page 172

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European Patient Group Directory 2008

Index A-Z List of Acronyms A-Z A-Z A-Z

LIST OF SPECIALISATIONS LIST OF ENTRIES LIST OF ACRONYMS

U (URN), User-Run Network; European Regional Network for User-Led Projects … Page 121 Organisations that do not appear to use an acronym AIDS Action Europe … Page 2 ASTRA; Central and East European Women’s Network for Sexual and Reproductive Health and Rights … Page 10 CML Advocates Network … Page 17 CONTICANET … Page 21 Correlation; European Network Social Inclusion and Health … Page 22 Das Lebenshaus e.V. … Page 24 DebRA Europe … Page 25 EU Civil Society Contact Group … Page 27 Eucrea International … Page 28 Euro-Ataxia; European Federation of Hereditary Ataxias … Page 31 Eurocare; European Alcohol Policy Alliance … Page 32 Eurocarers; European Organisation for Carers … Page 33 Eurochild … Page 34 Eurochromnet; European Networks for Rare Chromosome Disorders on the Internet… Page 35 Euro-Methwork … Page 36 EuroNGOs; European NGOs for Sexual and Reproductive Health and Rights, Population and Development … Page 37 EUROPA DONNA—the European Breast Cancer Coalition … Page 38 Europa Uomo … Page 39 Europacolon … Page 40 European Gaucher Alliance … Page 85 Euro-Psy-Rehabilitation … Page 127 Eurordis; European Organisation for Rare Diseases … Page 128 Hear-it AISBL … Page 138 HelpAge International … Page 140 Inclusion Europe … Page 143 Leukämie-Online e.V. … Page 155 Lymphoma Coalition … Page 156 ORPHANET … Page 163 Retina International … Page 167 Stichting IEU-Alliance; Stichting Iatrogenic Europe Unite-Alliance … Page 170 YouAct; European Youth Network on Sexual and Reproductive Rights … Page 126 11q Network; European Chromosome 11q Network … Page 56

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Foreword from the publisher

Burson-Marsteller http://www.bmbrussels.eu 37 Square de Meeûs 1000 Brussels Belgium T: 0032-(0)2-743-66-11 F: 0032-(0)2-733-66-11 Email: robert.mack@bm.com Contact person: Robert Mack

Burson-Marsteller is proud to publish the second edition of the European Patient Group Directory. The overwhelmingly positive response to the first edition last year was just one indication of the important role that patient groups now play in European Union health policy development. As in 2007, the Directory has been produced in cooperation with PatientView. This edition contains not only updated information on the groups in last year’s Directory, but also profiles of some 45 new groups. As such, we hope it once again proves to be a useful resource to all those involved in the EU health policy debate, including patient groups themselves, politicians, officials, companies, NGOs and other stakeholders. Health policy will remain high on the European Union’s policy agenda in 2008 and beyond, as the EU increasingly works together to combat disease and to ensure that high-quality health services are available and affordable for all Europeans, and works to adapt the related legislative framework. Robert Mack CEO Burson-Marsteller Brussels March 2008

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Foreword from the author

PatientView http://www.patient-view.com Woodhouse Place Upper Woodhouse Knighton, Powys LD7 1NG, Wales T: 0044-(0)1547-520-965 F: 0044-(0)1547-528-501 Email: info@patient-view.com Contact person: Clive Nead

This second edition of the European Patient Group Directory follows the lead set by its predecessor, but is larger and more detailed, with 45 new entries. Most of the organisations listed in the 2007 edition are back, with their details checked and updated. 13 organisations are no longer present (either because they closed down, or were no longer considered suitable for an entry). What is a pan-European patient group? This Directory considers an organisation ‘pan-European’ if it has members or interests in more than one European country. The Directory’s definition of ‘patient group’ is more wide-ranging, taking in organisations that are interested in health advocacy and are relevant to patients. Included in the Directory, therefore, are carers’ groups, children’s groups, consumer organisations, disability groups, older people’s groups, research organisations, and semi-professional groups (when they have patient presentation). The 2008 Directory contains more ‘international’ groups than in 2007. These are incorporated if they maintain a European remit and/or a functioning European regional arm. One example is the International Osteoporosis Foundation (IOF), which has two European bases (in Nyon, Switzerland, and Lyon, France). Another is the International Planned Parenthood Federation (IPPF), which has a strong European element to its network. What is new in the 2008 Directory?

• 45 ‘new’ organisations (a number of them cancer groups). • Two new disease areas—bone, and endocrine—represented

by the

IOF and Hypoparathyroidism Europe respectively.

• More

facts—such as whether, and where, organisations registered as non-profitmaking entities (or as companies).

are

• Organisations’

funding sources have been split into income from pharmaceutical companies and income from elsewhere.

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Foreword from the author

• Two

new indexes of organisations. In addition to an A-Z list of entries by specialty, the 2008 Directory adds an index of entries listed alphabetically, and an index of organisations’ acronyms.

Main differences in European health advocacy 2007-2008 Aside from an expansion of global health advocates into Europe, the crowd of pan-European health campaigners on the continent has increased in number in the last year (reflected in the presence of many more disease-oriented groups in the Directory). In the category of cancer, for instance, this 2nd edition of the Directory lists 17 groups, compared to the 2007 edition’s nine. Distinctions between civic and patient-motivated health advocacy groups remain. Whatever the approach taken, however, health advocacy as a whole has become more sophisticated—and more effective. Success has, in turn, encouraged groups to feel more ambitious. Alzheimer Europe, for instance, states in the Directory: “AE wants to change perceptions, practice, and policy, in order to guarantee equal access to high-quality services and treatment in the EU for people with dementia (and their carers)”. Sources for this Directory As in 2007, the Directory has been sourced from public-domain information. Prior to publication, every listed organisation was invited to scrutinise (and, if necessary, amend or correct) the information in the entry about them. About 60% replied. PatientView thanks these groups. PatientView has worked hard to ensure the accuracy of the information within the 2008 Directory. If any errors have crept in, we apologise. [The telephone/fax numbers listed in the Directory all have international codes. In preference to standardising them, PatientView has adopted the policy of providing numbers as given to us by the organisations themselves.]

Clive Nead Editorial Director PatientView March 2008 Organisations that wish to be included in the 2009 edition of the Directory, or want to update the Directory’s existing entry about them, may do so by emailing the PatientView contact details (at the head of this Foreword).

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Key to data

Name of organisation

THE ORGANISATION’S SPECIALISATION/S

(Usually the full name. In a few cases, an acronym or shortened name—as per the organisation’s own ostensible preference)

Acronym Primary website A senior executive or contact person [where known] Address (headquarters)

General contact telephone number [as provided by the organisation] Fax number Contact email

Organisation’s logo, or an image representing an aspect of the organisation’s outlook or activities [supplied by the

Short description of the organisation (usually sourced from the organisation’s website, or composed for the Directory by the organisation itself)

“Short quotation summing up some of the organisation’s ethos or activities”

organisation itself, by PatientView, or by the National Institutes of Health]

Geographic remit: The geographic area in which the organisation operates (always Europe, or some part of Europe). Annual revenue: 2006 or 2007 gross revenue (in Euros). Given when known. Pharma funding: Sources of funding if from pharmaceutical companies or their representative bodies. Names given when known. Non-pharma funding: Other sources of funding. Names given when known. Membership: Many of the organisations in this Directory are umbrella groups, and therefore tend to have numerous member organisations. Numbers and countries of origin given when known. Full-time employed staff: Number given when known. Volunteers: Number of unpaid workers. Given when known. Registration number: If the organisation is registered as a charity or other form of non-profit entity, the registration number is given when known. Country of registration: Country in which registered. Given when known. Company: A few organisations are registered companies. Number and country of registration given when known.

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE

Active Citizenship Network (ACN) http://www.activecitizenship.net Director: Charlotte Roffiaen

Via Flaminia, 53 00196 Rome Italy

T: 0039-06-36-71-81 F: 0039-06-36-71-83-33 Email: info@activecitizenship.net

Promotes the building of European citizenship through networking and co-operation between national and local citizenship organisations in Europe, and through the promotion of projects and activities aimed at strengthening the role of citizens in public policies.

“The role of citizens and citizen organisations as actors of public policies in Europe has been constantly growing in the past 30 years. Nevertheless, neither the European treaties, nor the legal systems of national states, recognise participation in policymaking as a fundamental right of citizens”

Geographic remit: Europe. Pharma funding: Almus, Bristol-Myers Squibb, Merck & Co, Merck Sharp & Dohme, Roche, and Schering Plough. Non-pharma funding: EU institutions (especially the European Commission), international agencies, national and regional institutions, and private companies. Funding is exclusively based on projects. Membership: About 80 partner organisations from all EU Member States (except Luxembourg). Full-time staff: 3. Country of registration: Italy. Registration number: 1167620.

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HIV / AIDS

AIDS Action Europe http://www.aidsactioneurope.org Western Office Co-ordinator: Martine de Schutter

Western Office c/o Soa Aids Nederland Keizersgracht 390 1016 GB Amsterdam The Netherlands

T: 0031-20-626-26-69 F: 0031-20-627-52-21 Email: westernoffice@aidsactioneurope.org

Influences AIDS policies through advocacy at global, European, and national levels. Builds NGO capacity via different projects. Facilitates linking and learning between European NGOs by hosting the Pan-European Database on HIV and AIDS (http:// www.hivaidsclearinghouse.eu).

“AIDS Action Europe is a panEuropean partnership of nongovernmental organisations (NGOs). We aim to create a more effective response to the HIV and AIDS epidemics in Europe and its neighbouring countries”

Geographic remit: Europe and neighbouring countries. Latest annual revenue: (2006) Within the range Euros 500,000 to 1m. Pharma funding: (2006) Bristol-Myers Squibb, and GSK’s Positive Action Programme. Non-pharma funding: (2006) Bill and Melinda Gates Foundation, CIDA, DANIDA, the European Commission, Deutsche AIDS Stiftung, Dutch Aids Fonds, National AIDS Trust, Sensoa, and Soa Aids Nederland. Membership: Around 200 member organisations in 47 countries. Full-time staff: 1 full-time co-ordinator in the Eastern Office, and 3 part-time staff in the Western Office. Volunteers: None.

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GENETIC / RARE DISEASES

Alfa Europe Federation e.V. (AEF) http://www.alfaeurope.org President: Larry Warren

Alpha One Suite, RCSI Building Beaumont Hospital Dublin 9 Ireland

T: 00353-1-452-4341 F: 00353-1-452-4341 Email: larryw@connect.ie

Co-ordinates the European selfhelp associations that specialise in alpha-1 antitrypsin deficiency. Supports new alpha-1 associations, and works in conjunction with national healthcare systems.

“Alfa Europe aims to improve the mediation between patients and public healthcare facilities, and arranges for experts to meet patients for a mutual understanding”

Geographic remit: Europe. Pharma funding: Various. Non-pharma funding: Public facilities, and schemes. Membership: 15 national member groups (each with 20-250 members) from the British Isles, French-language countries, German-language countries, Mediterranean countries, Scandinavian countries, plus the Czech Republic. Full-time staff: None. Volunteers: 6. Country of registration: Germany. Registration number: VR 1448.

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NEUROLOGICAL CONDITIONS

Alzheimer Europe (AE) http://www.alzheimer-europe.org Executive Director: Jean Georges

145 route de Thionville L-2611 Luxembourg

T: 00352-29-79-70 F: 00352-29-79-72 Email: info@alzheimer-europe.org

Aims to improve the care and treatment of Alzheimer’s patients through intensified collaboration between its member associations. In the longer term, AE plans to become the major coordinating centre and information provider for all healthcare organisations working in this field.

“AE wants to change perceptions, practice, and policy in order to guarantee equal access to high-quality services and treatment in the EU for people with dementia (and their carers)” Geographic remit: Europe. Latest annual revenue: (2006) Within the range Euros 500,000 to 1m. Pharma funding: 24% of AE’s 2006 funding came from pharmaceutical companies and other corporate sponsors. Main sponsors (over Euros 5,000) were GSK, Janssen-Cilag, Lundbeck, Merck Sharp & Dohme, Novartis, Numico, and Pfizer. Non-pharma funding: (2006) European Commission and project funding (45%); member organisations (18%); publications, conference registrations, and other services (10%); other income (3%).

Membership: Patient groups in Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Finland, France, Germany, Greece, Iceland, Ireland, Italy, Luxembourg, Netherlands, Norway, Malta, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, Turkey, and the UK. Full-time staff: 4. Volunteers: 5-12 Board members; representatives from national organisations. Country of registration: Luxembourg. Registration number: Registre de Commerce et des Sociétés, number F2773.

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BLOOD DISORDERS

AntiCoagulation Europe (ACE) http://www.anticoagulationeurope.org Director: Eve Knight

PO Box 405 Bromley Kent, BR2 9WP England

T: 0044-(0)20-8289-6875 F: 0044-(0)20-8464-2417 Email: anticoagulation@ntlworld.com

Committed to the prevention of thrombosis and the provision of information and support for people already receiving anticoagulant and anti-platelet therapy. Campaigns for excellence and equity of provision of healthcare.

“There is a need for more patient information for people on oral anticoagulation therapy”

Geographic remit: Europe. Latest annual revenue: (2006) £36,000 [Euros 48,000]. Pharma funding: (2007) Roche. Non-pharma funding: Advertising and subscription receipts, Gift Aid, and sponsorship. Membership: Representatives in France, Ireland, and the UK. Full-time staff: None. Volunteers: All staff are volunteers. Country of registration: England and Wales. Registration number: 1090250.

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HEART DISEASE / CIRCULATORY

Arrhythmia Alliance (the Heart Rhythm Charity) (AA) http://www.arrhythmia-europe.eu Founder and Trustee: Trudie Lobban

PO Box 3697 Stratford-Upon-Avon Warwickshire, CV37 8YL UK

T: 0044-(0)-1789-450-787 F: 0044-(0)-1789-450-682 Email: info@heartrhythmcharity.org.uk

A coalition of charities, patient groups, patients, carers, medical groups and allied professionals. working together to promote rapid and accurate diagnosis and patient access to arrhythmia services and effective treatment. Provides patient support and information. Campaigns and increases awareness, and educates on heart rhythm disorders, their symptoms and effects.

“The AA raises the public profile of arrhythmias, and promotes better quality of life for people with cardiac arrhythmia”

Geographic remit: International, although currently focusing on Europe. Non-pharma funding: Companies, corporate, community and individual fundraising, foundations, and trusts. Membership: 7 national arrhythmia organisations (Belgium, Ireland, Italy, the Netherlands, Portugal, Sweden, and the UK). Country of registration: England and Wales. Registration number: 1107496.

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DISABILITY

Association for Research and Training on Integration in Europe (ARFIE) http://www.arfie.info

President: Raymond Ceccotto

APEMH—Euroformat 32, Square Ambiorix B-1000 Brussels Belgium

T: 0032-(0)2-230-66-93 F: 0032-(0)2-230-05-60 Email: arfie@arfie.info

A European network that aims to improve the assistance, social integration and social services available to people with a disability (including learning difficulties and psychiatric disorders). Members run training, life skills and placement courses for disabled people wishing to find work (and also train the staff who work with them).

“We concentrate on the ‘burn-out’ syndrome, the dual problem of learning disability and mental illness combined, sexuality and personal relationships, and ageing and disability”

Geographic remit: Europe. Non-pharma funding: EU programmes, and membership fees. Membership: Member associations in 14 European countries (Austria, Belgium, Cyprus, Denmark, Finland, France, Germany, Greece, Hungary, Italy, Luxembourg, the Netherlands, Portugal, and the UK).

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CANCER

Association of European Cancer Leagues (ECL) http://www.europeancancerleagues.org Managing Director: Dr Wendy Tse Yared

479 Chaussée de Louvain B-1030 Brussels Belgium

T: 0032-(0)2-256-20-00 F: 0032-(0)2-256-20-03 Email: info@europeancancerleagues.org

An alliance of national and regional cancer leagues. The ECL’s objectives include improving communication, promoting, enhancing and coordinating collaboration between European leagues, and fostering fruitful activities with EU institutions and with other cancer-related organisations, in order to influence policy, and to reduce the growing cancer burden in Europe. Member leagues (with a staff of about 2,550 people) have spent over Euros 120 million in the fight against cancer.

“The cancer leagues’ major fields of activity are cancer prevention, advocacy, public education and information, professional education and information, assistance, services and rehabilitation for patients and their families and relatives, fundraising, and participation in (and support for) scientific research”

Geographic remit: Europe. Latest annual revenue: (2007) Within the range Euros 50,000 to 500,000. Non-pharma funding: (2006) Membership fees (80%), and donations (20%). Membership: 28 leagues in 19 European countries. Full-time staff: 3.

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GASTRO-INTESTINAL

Association of European Coeliac Societies (AOECS) http://www.aoecs.org Senior members of staff: Jean-Louis Kieffer [Luxembourg], Christian Scerri [Malta], and Tunde Koltai [Hungary]

c/o Jean-Louis Kieffer 34 rue de Bonneville L-5950 Itzig Luxembourg

T: 00352-366-114 F: 00352-366-114 Email: board@aoecs.org

The umbrella organisation of European coeliac societies. Coordinates international activities and matters of common interest to members, and promotes the exchange of information among members for the benefit of Europeans affected by coeliac disease or dermatitis herpetiformis. Actively encourages cross-border activities, and participates in scientific research. “The prevalence of coeliac disease in the Western world today is over 1%— which means that over 5 million coeliacs live in the EU Member States alone”

Geographic remit: Europe. Non-pharma funding: Membership fees from national coeliac associations. Membership: 34 associations from 30 European countries. Full-time staff: None. Volunteers: All staff act on a voluntary basis. Country of registration: Belgium.

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REPRODUCTIVE / SEXUAL HEALTH

ASTRA (Central and East European Women’s Network for Sexual and Reproductive Health and Rights) http://www.astra.org.pl Contact: Wanda Nowicka Federation for Women and Family Planning Nowolipie 13/15 00-150 Warsaw Poland

T: 0048-22-635-93-95 F: 0048-22-887-81-40 Email: info@astra.org.pl

A regional network of NGOs and individuals. ASTRA works for the advancement of sexual and reproductive rights as fundamental human rights, and advocates for their observance, prioritisation and implementation, both nationally and internationally.

“Today, in Europe, women’s sexual and reproductive rights and health are under serious attack. In several of the EU Member States, women’s sexual and reproductive rights and health are repressed and/or denied”

Geographic remit: Central and Eastern Europe. Membership: 14 member organisations in 9 European countries (Albania, Bulgaria, Croatia, Latvia, Lithuania, Macedonia, Poland, Romania, and Slovakia).

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LEARNING DISABILITY

Autism-Europe (A-E) http://www.autismeurope.org President: Evelyne Friedl

Rue Montoyer 39 1000 Brussels Brussels

T: 0032-(0)2-675-75-05 F: 0032-(0)2-675-72-70 Email: secretariat@autismeurope.org

The only organisation representing people with autism-spectrum disorder at European level. Aims to advance the rights of people with autism (and their families), and to help them improve their quality of life. Raises public awareness, and seeks to influence European decision-makers on all issues relating to autism.

“The engagement of AE in defending the rights of people with autismspectrum disorder, even by means of legal instruments (such as the collective complaint against France brought before the Council of European Committee of Social Rights), has been widely recognised by European institutions”

Geographic remit: Europe. Non-pharma funding: Donations, magazine subscriptions, membership fees, and some funding from the European Commission. Membership: Over 80 member associations in 30 European countries (including Belgium, Bulgaria, Croatia, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Ireland, Italy, Luxembourg, Macedonia, the Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Spain, Sweden, Switzerland, and the UK). Full-time staff: 6. Volunteers: 37-member Council of Administration. Country of registration: Belgium.

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GENETIC / RARE DISEASES

Barth Syndrome Trust (BST) http://www.barthsyndrome.org Chairperson: Michaela Damin

1 The Vikings Romsey Hampshire, SO51 5RG UK

T: 0044-(0)-1794-518-785 F: 0044-(0)-8707-066-360 Email: info@barthsyndrome.org.uk

Raises awareness of Barth syndrome, and supports affected families. Promotes research into the disorder and the search for a treatment/cure.

“The BST looks to saving lives through education, through advances in treatment, and the pursuit of a cure for Barth syndrome”

Geographic remit: Europe. Latest annual revenue: (2007) £15,000 [Euros 20,000]. Non-pharma funding: Foundations, the general public, and members’ personal fundraising. Membership: 150 (European members from Austria, Belgium, the Czech Republic, France, Germany, Italy, the Netherlands, Portugal, Spain, and the UK). Full-time staff: None. Volunteers: 15. Country of registration: England and Wales. Registration number: 1100835.

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NEUROLOGICAL CONDITIONS

Brain Injured and Families European Confederation (BIF) http://www.bif-ec.eu

Secretary General: Gérard Gueneau

28 Avenue du Parc de Procé 44100 - Nantes France

T: 0033-240-73-27-42 Email: gueneau.gerard@orange.fr

Links European nations together to speak as one voice for people who have suffered brain injuries (and their families). Promotes the understanding of all aspects of brain injury, and provides support for people with brain injury, their families and carers.

“The BIF aims to get the specificity of acquired brain injury, which still remains an ‘ignored plague’, recognised at both national and European levels”

Geographic remit: Europe. Latest annual revenue: Euros 3,500. Membership: 17 national associations (Austria, Belgium, the Czech Republic, France, Denmark, Finland, Germany, Ireland, Italy, the Netherlands, Poland, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Volunteers: One or two per association. Country of registration: Belgium. Registration number: 5410/2000.

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE

Bureau Européen des Unions de Consommateurs

(BEUC) [European Consumers Organisation] http://www.beuc.eu Director General: Monique Goyens

Avenue de Tervueren 36 Bte 4 B-1040 Brussels Belgium

T: 0032-(0)2-743-15-90 F: 0032-(0)2-740-28-02 Email: consumers@beuc.eu

A federation of independent national consumer organisations in Europe. Seeks to influence the development of policy, and to promote and defend the interests of European consumers. One of its major areas of activity is in advocating for healthy diet and food products in Europe.

“More and more patients want to be involved and actively participate in decisions regarding their health”

Geographic remit: Europe. Latest annual revenue: Within the range Euros 2m to 2.5m. Non-pharma funding: The European Commission and membership contributions. Membership: 41 independent national consumer organisations from 30 European countries (Austria, Belgium, Bulgaria, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Luxembourg, Macedonia, Malta, the Netherlands, Norway, Portugal, Poland, Romania, Slovakia, Slovenia, Spain, Switzerland, Sweden, and the UK). Full-time staff: 34. Volunteers: None.

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NEUROLOGICAL CONDITIONS

Cerebral Palsy-European Communities Association (CP-ECA) http://www.icps.org.uk Director: Aimo Strömberg

Malmin kauppatie 26 00700 Helsinki Finland

T: 00358-400-421652 F: 00358-(09)-5407-5460 Email: aimo.stromberg@cp-liitto.fi

Founded in 1969 as the European arm of an internationally-run self-help group, the International Cerebral Palsy Society (ICPS, a UK charity).

“Although great advances have been made in the social acceptance and development of services for people with CP (and their families) in many countries, others still lag behind, or have not yet even reached the starting post. Levels of understanding, development, and capability vary enormously from country to country. There is no set pattern of development, and the outcome is often unpredictable”

Geographic remit: Europe (and international). Latest annual revenue: (2006) Under Euros 155,000 [ICPS]. Non-pharma funding: Membership fees, and funding from EU institutions, private companies, and international agencies (on a project-by-project basis). Membership: Members (mostly patient organisations and individuals) in 60 countries. Full-time staff: 1. Country of registration: England and Wales. Registration number: 273102.

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PUBLIC HEALTH

Club Européen de la Santé (CES) http://www.clubeuropeendelasante.org Secretary General: Dr Jean-Pierre Deshons

49 rue Galilée 75116 Paris France

T: 0033-(0)1-53-32-76-76 F: 0033-(0)1-40-70-16-14 Email: club@clubeuropeendelasante.org

A non-profit association committed to developing health promotion, raising awareness, and encouraging individuals to take responsibility for their own health. Helps companies and other enterprises establish health-related activities and training, and to promote healthy behaviours in the workplace. Cosponsored the UNESCO 1st Global Summit on Cervical Cancer, March 2007.

Geographic remit: Europe. Non-pharma funding: Membership fees. Volunteers: 12-member Board.

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CANCER

CML Advocates Network http://www.cmladvocates.net Co-Founders and Moderators: Sandy Craine, Jan Geissler, Jana Pelouchová, and Giora Sharf

Am Rothenanger 1b D-85521 Riemerling Germany

T: 0049-89-6283-6807 F: 0049-89-6283-6807 Email: info@cmladvocates.net

A virtual network and an Internet platform for chronic myeloid leukaemia (CML) patient organisations. Provides a Web directory of CML patient groups worldwide. Acts as a Web-based collaboration platform for CML patient advocates to share best practice on cancer patient advocacy.

“The Network was founded, and is moderated, by voluntary representatives of the founding nonprofit patient organisations. It supports advocates from leukaemia patient organisations Europe-wide (and worldwide)”

Geographic remit: Worldwide (founded in Europe). Latest annual revenue: (2008) Approximately Euros 1,000. Pharma funding: None. Non-pharma funding: Member patient groups. Membership: 29 (European members in Bulgaria, Croatia, the Czech Republic, Estonia, Germany, Hungary, Latvia, Lithuania, the Netherlands, Poland, Portugal, Romania, Sweden, and the UK). Full-time staff: None. Volunteers: 4. Registration number: Not registered as a charitable organisation. Purely a Webbased, virtual network.

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AUTO-IMMUNE / IMMUNE DISEASES YOUNG PEOPLE

Coeliac Youth of Europe (CYE) http://www.cyeweb.eu General Coordinator: Ivana Losa

c/o NCUF Postboks 4725 Nydalen 0421 Oslo Norway

T: 0039-331-6677-054 F: 0047-22-799-395 Email: cye.board@gmail.com

An international forum for raising awareness, exchanging knowledge and working together for a better future. Creates programmes and initiatives for young coeliacs, including international summer camps, a network for travelling, and information on how and where to get gluten-free food in Europe. Cooperates with other organisations.

“The CYE vision is to improve life conditions for young people with coeliac disease. CYE should create, one day, a Coeliac Youth of the World!”

Geographic remit: Mainly Europe. Pharma funding: None. Non-pharma funding: The Association of European Coeliac Societies (AOECS). Membership: Several delegates from each member country (members in Austria, Belgium, Croatia, Denmark, Finland, France, Germany, Hungary, Italy, Lithuania, Luxembourg, the Netherlands, Norway, Poland, Portugal, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Volunteers: All CYE participants are volunteers. Registration number: None.

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DISABILITY

Confederation of European social Firms, Employment initiatives and social Co-operatives (CEFEC) http://www.cefec.org

Coordinator: Dr Marianna Georgalis

Harissis 6 104 39 Athens Greece

T: 0030-210-82-59-797 F: 0030-210-88-18-946 Email: secretariat@cefec.org

Represents small and medium-sized enterprises, NGOs, and other bodies that share the aim of creating employment for people with a disability in socially-oriented businesses. Annual conference brings together users of mental health services, members, mental health professionals and managers.

“People with a disability have the right to a normal workplace in which they can also expect to receive the same rights as any able-bodied person—a normal work contract, and the same salary”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: 23 member organisations in 15 European countries (Austria, Belgium, Bulgaria, Cyprus, the Czech Republic, Finland, Germany, Greece, Ireland, Portugal, Slovenia, Spain, Sweden, Switzerland and the UK). Full-time staff: None (1 part time). Volunteers: Includes a 13-member Executive Committee.

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FAMILIES AND HEALTH

Confederation of Family Organisations in the European Union (COFACE) http://www.coface-eu.org Director: William Lay

Rue de Londres 17 105 Brussels Belgium

T: 0032-(0)2-511-41-79 F: 0032-(0)2-514-47-73 Email: secretariat@coface-eu.org

An international, pluralistic, not-for-profit, voluntary organisation that promotes family policy, solidarity between generations, and the interests of children within the EU. Links together general and single-issue national family organisations. “In order to promote healthy nutrition, COFACE has launched missions to provide families with all the information they need to eat more healthily. COFACE has also participated in actions against obesity in Europe, and informed families about the consequences of using drugs and alcohol”

Geographic remit: Europe. Non-pharma funding: The European Commission. Membership: Over 50 member organisations (Austria, Belgium, Bulgaria, Cyprus, the Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Lithuania, Luxembourg, Poland, Portugal, Romania, Slovakia, Slovenia, Spain). Full-time staff: 5. Country of registration: Belgium.

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CANCER

CONTICANET http://www.conticanet.eu Project Manager: Emmanuelle Da Silva

c/o ARTTIC International Management Services 58A rue du Dessous des Berges 75013 Paris France

T: 0033-1-53-94-54-60 F: 0033-1-53-94-54-70 Email: dasilva@arttic.fr

A network of excellence that generates a critical mass of key stakeholders to overcome current difficulties in the understanding, diagnosis, and management of connective tissue cancers. As well as developing joint research activities, also liaises with regulatory bodies and health organisations to ensure that new diagnostic and therapeutic tools are rapidly distributed across to ensure equal access to diagnosis and treatment. “CONTICANET works closely with patient advocacy groups to promote efficient interactions between them and researchers, regulation authorities, and clinicians in the field of connective tumours, through communication, and definition of common goals and strategies”

Geographic remit: Europe. Non-pharma funding: 6th Framework Programme of the EU. Membership: A consortium of 19 partner organisations, including 2 patient organisations in France, 1 in Germany, and 2 in the UK. Full-time staff: 3 at the Network office.

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ADDICTION PUBLIC HEALTH

Correlation (European Network Social Inclusion and Health) http://www.correlation-net.org Project Co-ordinators: Eberhard Schatz and Katrin Schiffer

c/o AMOC/DHV Stadhouderskade 159 1074 BC Amsterdam The Netherlands

T: 0031-20-672-11-92; 0031-20-570-78-27 F: 0031-20-671-96-94 Email: info@correlation-net.org

Aims to improve access to health and social services in Europe for people marginalised or excluded from them, such as ethnic minorities, sex workers, the homeless, and drug users.

“Correlation aims to be an open network”

Geographic remit: Europe. Membership: Around 70 partner organisations in 28 European countries. Full-time staff: 2. Volunteers: None. Country of registration: The Netherlands. Registration number: None.

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GENETIC / RARE DISEASES

Cystic Fibrosis Europe (CFE) http://www.cfww.org/cfe.index.asp Secretary: Birgit Dembski

In den Dauen 6 D-53117 Bonn Germany

T: 0049-228-98780-31 F: 0049-228-98780-77 Email: info@cf-europe.info

The federation of national European cystic fibrosis associations, and a subdivision of Cystic Fibrosis Worldwide. Represents and defends the interests of CF patients and their families, raises public awareness and understanding, promotes optimal diagnosis and treatment, and provides a forum for exchange of views and experience on all issues related to cystic fibrosis in Europe.

“Cystic fibrosis is the most frequentlyoccurring life-threatening genetic disease in Europe”

Geographic remit: Europe. Membership: 32 national CF associations. Full-time staff: None. Country of registration: Germany.

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CANCER

Das Lebenshaus e.V. http://www.daslebenshaus.org Spokesperson: Markus Wartenberg

Frankfurter Strasse 16 D-61203 Reichelsheim Germany

T: 0049-(0)700-4884-0700 F: 0049-(0)6035-18-96-16 Email: info@lebenshauspost.org

Specialises in gastrointestinal stromal tumors (GIST), kidney cancer, and sarcomas. Provides information, organises national and regional events, supervises regional patient groups, and maintains close contact with healthcare professionals to optimise the quality of treatment.

“Das Lebenshaus is an information platform for patients and healthcare professionals. It helps patients cope with their disease, seeks to improve the treatment situation, and supports patients’ rights”

Geographic remit: German-speaking countries of Europe (close cooperation with equivalent groups elsewhere). Pharma funding: Bayer Healthcare, Novartis Pharma GmbH, and Pfizer Pharma GmbH. Non-pharma funding: Donations from patients, relatives, friends, and companies. EU subsidies, and membership fees. Membership: 600 (from Austria, Germany, and Switzerland). Full-time staff: 2.5. Volunteers: Several. Country of registration: Germany. Registration number: VR 1152.

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GENETIC / RARE DISEASES

DebRA Europe http://www.debra-international.org Director: John Dart

c/o DebRA UK DebRA House 13 Wellington Business Park Dukes Ride, Crowthorne Berkshire, RG45 6LS UK

T: 0044-(0)-1344-771-961 F: 0044-(0)-1344-762-661 Email: john@debra.org.uk

DebRA Europe is a regional grouping within DebRA International, an umbrella organisation for national associations representing people with epidermolysis bullosa (EB). DebRA Europe participates in DebRA International activities, and arranges its own events, but is managed by DebRA UK.

“DebRA Europe is active in European disability programmes, and is representative on all EB issues within the European Disability Forum”

Geographic remit: Europe. Latest annual revenue: (2006) Approximately Euros 8.8m [for the parent body, DebRA UK]. Non-pharma funding: (2006) Charity shops, individual donations, investments, grants to DebRA UK from foundations, funds, and the Scottish Executive. Membership: National groups in 22 European countries (Austria, Belgium, Bulgaria, Croatia, the Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, the Netherlands, Norway, Poland, Portugal, Romania,

Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None for DebRA Europe. Resources come from member groups. Volunteers: Includes a 7-person Executive Committee. DebRA UK has over 700 volunteers. Country of registration: England and Wales. Registration number: 1084958.

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DISABILITY

Disabled Peoples' International-Europe (DPI-Europe) http://www.dpi-europe.org Regional Development Officer: Rita Barbuto

Via dei Bizanti, 97 88046 Lamezia Terme Catanzaro, Calabria Italy

T: 0039-096-8463-499 F: 0039-081-8140-692 Email: office@dpi-europe.org

Promotes the human rights of people with a disability, advocates on behalf of their economic and social integration, and empowers and supports organisations of disabled people and their members.

“DPI-Europe is a network of national organisations or assemblies of disabled people, established to promote human rights of disabled people through full participation, equalisation of opportunity and development”

Geographic remit: Europe. Latest annual revenue: No specific budget. Membership: 36 national assemblies. Full-time staff: 1-2. Volunteers: 20 to 50, depending on the project. Country of registration: Not yet in Europe (in Canada).

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE

EU Civil Society Contact Group http://www.act4europe.org Coordinator: Regula Heggli

c/o Social Platform 18 Square de Meeus B-1050 Brussels Belgium

T: 0032-(0)2-511-17-11 F: 0032-(0)2-511-19-09 Email: coordinator@act4europe.org

Formed in 2002. Brings together eight NGO sectors—culture, development, environment, human rights, lifelong learning, public health, social, and women. Its Act4Europe campaign aims to encourage more active participation of NGOs in the debate on the future of Europe.

“Together, we work to develop the dialogue between civil-society organisations and EU institutions as an essential part of strengthening participatory democracy”

Geographic remit: Europe. Non-pharma funding: Membership contributions, and a grant from the King Baudouin Foundation. Membership: Eight NGO platforms: CONCORD (development); EFAH/FEAP (culture); EPHA (public health); EUCIS (lifelong learning); EWL (women); Green 10 (environment); HRDN (human rights); and Social Platform (social). Full-time staff: None (1 part time).

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DISABILITY

Eucrea International http://www.eucrea-international.org Secretary General: Peter Radtke

c/o Cemaforre 115 rue de Ménilmontant F-75020 Paris France

T: 0033-(0)1-47-97-87-26 F: 0033-(0)1-47-97-27-83 Email: eucrea.international@wanadoo.fr

A non-governmental organisation that promotes equal opportunities in art, culture, and the media for people with a disability. Acts as a European platform of information and exchange, and lobbies on behalf of the issue of culture and disability.

“Access to culture is a fundamental right, and a link to society—which is a prerequisite to any educational and professional integration”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: Nearly 20 organisations in 10 European countries (Belgium, Denmark, Finland, France, Germany, Greece, Italy, Portugal, Spain, and the UK). Country of registration: Belgium.

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ADDICTION HIV / AIDS PUBLIC HEALTH

Eurasian Harm Reduction Network (EHRN) http://www.ceehrn.org Director: Raminta Stuikyte

Šiaulių Str. 5/1-21 Vilnius LT-01133 Lithuania

T: 00370-5-2691-600 F: 00370-5-2691-601 Email: info@harm-reduction.org

A network of organisations that supports, develops and advocates for harm-reduction approaches in the fields of drugs, HIV, public health and social exclusion by following the principles of humanism, tolerance, partnership, and respect for human rights and freedoms.

“The HIV epidemic in the countries of central and eastern Europe is rising faster than anywhere in the world”

Geographic remit: Central and eastern Europe (and Asia). Membership: Over 300 member organisations in 26 countries (those in central and eastern Europe: Albania, Bosnia and Herzegovina, Bulgaria, Croatia, the Czech Republic, Estonia, Hungary, Lithuania, Latvia, Macedonia, Poland, Romania, Serbia and Montenegro, Slovakia, and Slovenia). Full-time staff: 6. Volunteers: 10. Country of registration: Lithuania. Registration number: Entity registered in Vilnius; identification code 125729365.

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DISABILITY

Euro Tinnitus Association (EuroTA) http://www.eurotinnitus.com President: Jeannot Pesché

9 Rue des Jardins L-4591 Differdange Luxembourg

T: 00352-2040-1410 F: 00352-2040-2303 Email: contact@eurotinnitus.com

An inter-regional patient organisation that promotes research in Europe into all innerear diseases. Provides information, and runs an online forum. Founders are mostly tinnitus patients.

“All membership fees will, apart from a small amount for administration, be invested in research. We want money to go where it belongs—to research”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: Individual members and organisations in 7 European countries (Belgium, France, Ireland, Italy, Luxembourg, Portugal, and Switzerland). Full-time staff: None. Volunteers: 6-member Executive Board. Country of registration: Luxembourg.

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GENETIC / RARE DISEASES

Euro-Ataxia (European Federation of Hereditary Ataxias) Secretary: Dagmar Kroebel

Haagwindelaan, 6 B-3090 Overijse Belgium

T: 0032-(0)2-736-39-76 Email: dk.euro-ataxia@skynet.be

A non-profit organisation formed in 1989 by national ataxia groups in Europe. Represents people with hereditary ataxias (rare diseases characterised by degeneration of the cerebellum, brain stem, and spinal cord), encourages research into causes and treatments, and campaigns for treatments to be made available.

“Our members work together to give people with hereditary ataxia as normal a life as possible”

Geographic remit: Europe. Latest annual revenue: Under Euros 50,000. Non-pharma funding: Member organisations, and voluntary subscriptions. Membership: National ataxia groups from Belgium, France, Finland, Germany, Ireland, Italy, the Netherlands, Spain, Sweden, Switzerland, and the UK. Full-time staff: None. All directors give time voluntarily. Volunteers: 15-member Medical Board. Country of registration: Belgium. Registration number: VZW 9240/92.

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ADDICTION PUBLIC HEALTH

Eurocare (European Alcohol Policy Alliance) http://www.eurocare.org Secretary General: Mariann Skar

96 Rue des Confédérés 1000 Bruxelles Belgium

T: 0032-(0)2-736-05-72 Email: mariann.skar@europanytt.no

An alliance of voluntary and nongovernmental organisations working to reduce alcohol-related harm in Europe. Concerned with the impact of the EU on alcohol policy in Member States. Creates ties between groups concerned with alcohol-related harm, influences European policymakers by advocating evidence-based and effective alcohol policy, monitors policy, and promotes the prevention of alcohol-related harm in EU decision-making. “Eurocare lobbies the European Commission, the European Parliament, and the European Council of Ministers to ensure that issues of alcohol-related harm are included in relevant policy discussions”

Geographic remit: Europe. Non-pharma funding: Members’ contributions (staff time or financial). Membership: 46 organisations throughout Europe (Belgium, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Ireland, Italy, Lithuania, the Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, and the UK). Full-time staff: 3. Volunteers: Includes a 6-person Board of Directors. Country of registration: Belgium.

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CARERS

Eurocarers (The European Organisation for Carers) http://www.eurocarers.org Member/Honorary Secretary: Sandrina Sangers and Marja Pijl

Mezzo John F. Kennedylaan 99 3981 GB Bunnik Netherlands

T: 0031-(0)30-659-22-22 F: 0031-(0)30-659-22-20 Email: enquiries@eurocarers.org

Launched in the European Parliament, Brussels, in 2007, in conjunction with an MEP Interest Group on Carers. Aims to act as a network to exchange information of importance to carers, to promote awareness of carer issues, influence EU policy on carers, and develop a research agenda. Securing a set of rights for carers is seen as a matter of importance.

“Too much is asked from carers —who are not given enough support”

Geographic remit: Europe. Membership: Over 30 national carers’ organisations and relevant research and development organisations. Country of registration: Luxembourg. Registration number: F6854.

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CHILDREN

Eurochild http://www.eurochild.org Secretary General: Jana Hainsworth

Rue de la Concorde 53 1050 Brussels Belgium

T: 0032-(0)2-511-70-83 F: 0032-(0)2-511-72-89 Email: contact@eurochild.org

A network of organisations and individuals working in Europe to improve the quality of life of children and young people. Eurochild’s work is underpinned by the principles enshrined in the 1989 UN Convention on the Rights of the Child.

“Unacceptable levels of poverty and social exclusion are still experienced by children throughout the EU”

Geographic remit: Europe. Pharma funding: Not applicable. Non-pharma funding: The European Commission (DG Employment, Social Affairs and Equal Opportunities), and some income from membership fees. Membership: 34 members in 18 countries. Full-time staff: 3 (plus 2 part time). Volunteers: Includes 2 volunteers/ interns supporting the office staff. Country of registration: Belgium.

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GENETIC / RARE DISEASES

Eurochromnet (European Networks for Rare Chromosome Disorders on the Internet) http://www.chromosomehelpstation.com/eurochromnet.htm Contact person: Annet van Betuw

T: 0031-317-42-33-45 F: 0031-317-42-96-80 Email: info@chromosomehelpstation.com

A virtual network of European support groups active on behalf of people with a rare chromosome disorder. Main aims are to raise awareness and stimulate debate about these medical conditions, as well as provide information via http://www.chromosome helpstation.com and a newsletter for partners. Founded in 2004.

“Because of the very small numbers of people with each individual chromosome disorder, affected families need to be able to contact each other throughout Europe. Even within the world of rare diseases, people with very-rare chromosome disorders feel alone, because of limited public awareness of these conditions (most of which have no classification code, and therefore no official recognition)”

Geographic remit: Europe. Latest annual revenue: None (Eurochromnet points out that it is a virtual network). Non-pharma funding: None. Membership: 14 members in 8 countries. Full-time staff: None. Volunteers: Eurochromnet members work for it on a voluntary basis.

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MENTAL HEALTH

Euro-Methwork http://www.quest4quality.nl/euromethwork Coordinator: Ernst Buning

c/o Quest for Quality BV 2nd floor, Vijzelstraat 77 1017 HG Amsterdam The Netherlands

T: 0031-20-3303-449 F: 0031-20-3303-450 Email: methwork@q4q.nl

A forum for Europeans active in the field of substitution treatment for heroin addiction— practitioners, researchers, and policymakers, as well as heroin users (and their families/ friends). Aims to improve the quality of pharmacotherapy in addiction treatment, and its accessibility. Provides information through its publications and website, offers training, and conducts advocacy.

“Opiate dependence exists all across Europe, and causes problems—not only at the level of individual patients and their families, but also for civil society”

Geographic remit: Europe. Pharma funding: BUFA, Essex Pharma, Molteni Farmaceutici, and Schering Plough. Non-pharma funding: The Amsterdam Municipal Health Service, Beun de Ronde, the European Commission, the International Harm Reduction Association, Itaca Europe, Quest for Quality BV, and Reckitt Benckiser. Membership: An informal network. Full-time staff: 1.

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PUBLIC HEALTH REPRODUCTIVE / SEXUAL HEALTH

EuroNGOs (European NGOs for Sexual and Reproductive Health and Rights, Population and Development) http://www.eurongos.org Coordinator: Mirja Leibnitz

Rue Royale 146 1000 Brussels Belgium

T: 0032-(0)2-250-09-62 F: 0032-(0)2-250-09-69 Email: mirja.leibnitz@eurongos.org

A membership-based platform for organisations specialising in sexual and reproductive health and rights (SRHR). Acts as a facilitator for member NGOs to exchange information and experiences in their areas of concern. Highlights the ways in which they are co-operating to advance SRHR in international development.

“EuroNGOs is a vibrant organisation with active members, and a sound reputation. Alliance building and joint groupings are thriving, highlighting the growing cohesion and trust among member organisations”

Geographic remit: Europe and international. Latest annual revenue: (2006) Euros 178,000. Non-pharma funding: (2006) Grants from the Gates, MacArthur, Packard, and UN Foundations, and from the United Nations Population Fund. Membership fees. Membership: 37 national SRHR organisations in 20 European countries (Austria, Belgium, Cyprus, Denmark, Estonia, Finland, France, Germany, Hungary, Ireland, Italy, Latvia, Lithuania, the Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, and the UK). Full-time staff: 1.

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CANCER

EUROPA DONNA—the European Breast Cancer Coalition http://www.europadonna.org Executive Director: Susan Knox

Via G Previati 12 Milan 20149 Italy

T: 0039-02-8907-9660 F: 0039-02-8907-9664 Email: info@europadonna.org

An independent, non-profit organisation whose members are affiliated groups from throughout Europe. Raises awareness of breast cancer, and mobilises the support of European women for improved breast cancer education, appropriate screening, optimal treatment and increased funding for research.

“EUROPA DONNA represents the interests of European women regarding breast cancer to local and national authorities, as well as to institutions of the EU”

Geographic remit: Countries within the European region (as defined by the World Health Organisation), and any country that is part of the EU or a potential candidate for admission. Non-pharma funding: (2007) Conference fees, the European Commission, industry, membership fees, and non-governmental sources (for instance, non-profit foundations). Membership: Affiliated groups from 40 countries, including all 27 EU Member States. Full-time staff: 4 (full and part time).

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CANCER

Europa Uomo http://www.cancerworld.org/europauomo Secretary: Professor Louis Denis

Oncologisch Centrum Antwerpen Lange Gasthuisstraat 35-37 B-2000 Antwerpen Belgium

T: 0032-(0)3-223-53-50 F: 0032-(0)3-223-53-52 Email: louis.denis@skynet.be

A European coalition of patient support groups for prostate diseases in general, and prostate cancer in particular. Aims include promoting the exchange of information on prostate cancer, increasing public awareness of prostate cancer and appropriate diagnosis and prognosis, ensuring high-quality, supportive care, and advocating on behalf of further research.

“To control the social burden of the disease, and lead to its eventual prevention, increased resources are necessary. These will allow for permanent advances in research and patient care”

Geographic remit: Europe. Latest annual revenue: Within the range Euros 50,000 to 500,000. Pharma funding: Branded pharma companies. Non-pharma funding: The European Commission, national governments, and private-sector healthcare providers. Membership: Member organisations in 17 European countries (Austria, Belgium, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, the Netherlands, Norway, Poland, Portugal, the Slovak Republic, Spain, Sweden and the UK). Full-time staff: None. Volunteers: Several hundred. Country of registration: Italy.

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CANCER

Europacolon http://www.europacolon.com Founder and Director: Jola Gore-Booth

3 Kericuff 22260 Ploezel France

T: 0033-2-96-95-04-02 F: 0033-2-96-95-06-30 Email: info@europacolon.com

Raises the profile of colorectal cancer, forms patient advocacy groups throughout Europe to create a colorectal cancer community, and increases awareness of symptoms and prevention of the disease. Campaigns for screening and improved choice and availability of treatment, and partners healthcare professionals in providing further training for the clinical community. Encourages improvements in European standards and in equity of care.

“Europacolon is committed to preventing deaths from colorectal cancer, and to improving the quality of life and support for people affected by the disease”

Geographic remit: Europe. Latest annual revenue: (2006) £135,996 [Euros 182,551]. Pharma funding: Ethicon, Merck, Pfizer, Roche, and Sanofi-Aventis. Non-pharma funding: Foundations, and the commercial sector. Membership: 5 affiliate members (Poland, Portugal, Slovakia, Slovenia, and Spain); 3 associate members (Austria, Hungary, and the UK); and 3 forthcoming affiliate members (Belgium, Croatia, and Finland). Full-time staff: All staff are independent consultants. Volunteers: Many. Company: Not-for-profit organisation. Registered company number: 5314195 (UK).

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HIV / AIDS

European AIDS Treatment Group (EATG) http://www.eatg.org Chair of the Board of Directors: Wim Vandevelde

Place Raymond Blyckaerts, 13 B-1050 Brussels Belgium

T: 0032-(0)2-644-42-10 F: 0032-(0)2-644-33-07 Email: office@eatg.org

Founded as a patient-based organisation in 1991. Mission is to help people with HIV/AIDS achieve the fastest-possible access to the latest-available products, devices, and diagnostic tests.

“Since being founded, the EATG has been at the forefront of the development of a civil-society response to the HIV/AIDS epidemic in Europe”

Geographic remit: Europe. Pharma funding: (2006) Abbott, Boehringer-Ingelheim, Gilead, GSK, Incyte, Merck and Co, Pfizer, Roche, Schering Plough, and Tibotec. Non-pharma funding: (2006) The European Commission. Membership: 84 individual members from 30 European countries. Full-time staff: 4. Country of registration: Germany. Registration number: 133/5906/0955.

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PUBLIC HEALTH

European Alliance for Access to Safe Medicines (EAASM) http://www.eaasm.eu Chair: Jim Thomson

Thameside House, Hurst Road Hampton Court Surrey, KT8 9AY UK

T: 0044-(0)20-8481-8115 F: 0044-(0)20-8481-8105 Email: enquiries@eaasm.eu

Takes action to improve patient safety. Involved in the anticounterfeiting activities of the European Commission, European Parliament and the WHO (including the DG Enterprise and Industry review of parallel trade and patient safety). Raises public awareness of the need to reduce consumer exposure to the risks of purchasing medicines online, and debates the patient safety aspect of parallel trade. “The EAASM is a pan-European patient safety alliance campaigning for the exclusion of counterfeit and substandard medicines from the supply chain”

Geographic remit: Europe. Pharma funding: Six pharmaceutical partners: Bayer Healthcare, Boehringer Ingelheim, Eli Lilly & Company, Johnson & Johnson, Pfizer, and Wyeth. Non-pharma funding: Sales of independent reports (for example, European Patient Safety and Parallel Pharmaceutical Trade: a Potential Public Health Disaster?, by Dr Jonathan Harper, November 2007). Developing a nonpharmaceutical fundraising strategy. Membership: 21 to date, from across Europe. Company: Community Interest Company, registration number 6384429 (UK).

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NEUROLOGICAL CONDITIONS

European Alliance of Neuro-Muscular Disorders Association (EAMDA) http://www.eamda.net Secretary: Rita Vella

c/o MDG Malta 4, Gzira Road Gzira GZR 04 Malta

T: 00356-21-34-66-88 F: 00356-21-31-80-24 Email: eamda@hotmail.com

Holds conferences and workshops on the subject of neuro-muscular disorders, and provides member organisations with information about the development and treatment of muscular dystrophy.

“The EAMDA should strive at being recognised in Brussels as the European representative of all muscle patients”

Geographic remit: Europe. Non-pharma funding: Conference and membership fees. Membership: Member associations in 29 European countries (Austria, Belgium, Bulgaria, Croatia, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Kosovo, Lithuania, Malta, the Netherlands, Norway, Poland, Romania, Serbia and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: 5-member Executive Committee.

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CHILDREN

European Association for Children in Hospital (EACH) http://www.each-for-sick-children.org Secretary: Dr Peg Belson

Email: pegbelson@hosp.demon.co.uk

The umbrella organisation for member associations involved in the welfare of all children before, during, or after a hospital stay. Its goal is the implementation of the EACH charter, which sets out the rights of children in hospital. Campaigns, and runs conferences.

“A particular interest for the EACH is the necessity for parents to be closely involved in all elements of children’s healthcare”

Geographic remit: Europe. Membership: 17 associations in 16 European countries (Austria, Belgium, Croatia, the Czech Republic, France, Finland, Germany, Greece, Hungary, Ireland, Italy, the Netherlands, Norway, Portugal, Slovenia, Spain, Sweden, and the UK).

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PUBLIC HEALTH

European Association for Injury Prevention and Safety Promotion (EuroSafe) http://www.eurosafe.eu.com Co-ordinator: Wim Rogmans

Rijswijkstraat 2 1059 GK Amsterdam The Netherlands

T: 0031-20-511-4513 F: 0031-20-511-4510 Email: secretariat@eurosafe.eu.com

A network of injury-prevention champions. Promotes the dissemination of information on injury burden, risks, and good practices to policymakers. Hopes to achieve awareness of the issue of safety among stakeholders, and stronger infrastructures within EU Member States for actions on prevention.

“The EuroSafe wants to achieve a safer life for European citizens. Among our many areas of specialisation are child safety, safety for older people, and consumer safety”

Geographic remit: Europe. Non-pharma funding: The European Commission. Co-funding for the Eurosafe's Child Safety Action Plan from the Health and Environment Alliance (HEAL), UNICEF Innocenti Research Centre, the Universities of Keele and the West of England, and the WHO-European Office. Membership: A number of institutional and individual members/partners, including the European Commission, UNICEF, and the World Health Organisation. Full-time staff: 4.

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DISABILITY

European Association of Cochlear Implant Users (EURO-CIU) http://eurociu.implantecoclear.org/euroeng.php Secretary: Dr Ruud Van Hardeveld

16 rue Emile Lavandier L-1924 Luxembourg

T: 00352-44-17-46 F: 00352-44-22-25 Email: eurociu@implantecoclear.org

A registered non-governmental and non-profitmaking association that represents at European level the interests of deaf or hearingimpaired people who have regained hearing perceptions through a cochlear implant (CI). Raises awareness, disseminates information, promotes communication and information systems friendly to CI users, and encourages research and development in the medical and technical fields of CI. “The EURO-CIU works toward the recognition by health insurance services of their obligation to people who need cochlear implants, and of the guarantee of adequate individual rehabilitation”

Geographic remit: Europe. Non-pharma funding: (2007) Advanced Bionics, Archie Sherman Charitable Trust, Cochlear Europe, MED-EL, and Neurelec. Membership: National associations or individual members in 17 European countries (Austria, Belgium, the Czech Republic, Denmark, Finland, France, Germany, Greece, Italy, Luxembourg, the Netherlands, Norway, Poland, Spain, Sweden, Switzerland, and the UK).

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AUTO-IMMUNE / IMMUNE DISEASES

European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS) http://www.sarcoidosis.biz Uerdinger Strasse 43 D - 40668 Meerbusch P.O. Box 30 43, D - 40650 Meerbusch Germany

T: 0049-(0)-21-50-70-59-670 F: 0049-(0)-21-50-70-59-671 Email: info@sarcoidosis.biz

A non-profit, independent, NGO of European people with sarcoidosis or other granulomatous disorders. Provides information on the condition. Promotes self help, increases public awareness, and develops support structures for European patients with sarcoidosis.

“The EPOS website is created by people with sarcoidosis for people with sarcoidosis”

Membership: 5 national patients’ organisations (Belgium, Germany, the Netherlands, Switzerland, and the UK).

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DISABILITY

European Association of Service Providers for Persons with Disabilities (EASPD) http://www.easpd.eu

Secretary General: Luk Zelderloo

Avenue d’Auderghem 63 1040 Brussels Belgium

T: 0032-(0)2-282-46-10 F: 0032-(0)2-230-72-33 Email: info@easpd.eu

Provides members with information and services (including networking and exchange possibilities at European, national, regional and local levels). Works to influence policy, and offers service providers a voice in Europe. Encourages research and development into improvements of service provision.

“The EASPD promotes the equalisation of opportunities for people with disabilities through effective and highquality service systems in Europe. The EASPD represents over 8,000 service provider organisations across Europe, and across disabilities”

Geographic remit: 47 countries of the Council of Europe. Pharma funding: None. Non-pharma funding: European projects, membership dues, and remunerated research work. Membership: About 95 (from Austria, Belgium, Bulgaria, Croatia, Cyprus, the Czech Republic, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Lithuania, Luxembourg, Macedonia, the Netherlands, Portugal, Romania, Spain, Sweden, and the UK). Full-time staff: 6. Volunteers: 1. Country of registration: Belgium.

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DISABILITY

European Blind Union (EBU) http://www.euroblind.org Director: Mokrane Boussaid

58 Avenue Bosquet 75007 Paris France

T: 0033-1-47-05-38-20 F: 0033-1-47-05-38-21 Email: ebuoffice@euroblind.org

The only organisation representing the interests of blind and partially-sighted people in Europe. Founded in 1984 as one of the World Blind Union’s six regional bodies.

“The decisions taken by the EU have a significant impact on the daily lives of people who are blind or partially sighted. The EBU works to make sure that the interests of these individuals are taken into account in all EU decisions which affect them”

Geographic remit: Europe. Non-pharma funding: Includes grants from the European Commission, member subscriptions, and sponsorship. Membership: 45 member countries. Full-time staff: 2.

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NEUROLOGICAL CONDITIONS

European Brain Council (EBC) http://www.europeanbraincouncil.org Liaison Officer and Administrator: Evelyn Sipido

11 Rue d’Egmont 11-1000 Brussels Belgium

T: 0032-(0)2-513-27-57 F: 0032-(0)2-513-64-11 Email: info@europeanbraincouncil.org

Promotes brain research in Europe, and advocates on behalf of improvements to the quality of life of people affected by brain disease. The EBC is exceptional in that it brings together patient representatives and academia as equal partners.

“The EBC represents a vast network of patients, doctors, and scientists, and these stakeholders, along with its industrial partners, make the EBC eminently suited to work in close partnership with the European Commission, the European Parliament, and the World Health Organization, as well as other decision making bodies”

Geographic remit: Europe. Pharma funding: (2006) Britannia, Eli Lilly, GSK, Janssen Cilag, Johnson & Johnson, Lundbeck, Merck Sharp & Dohme, Novartis, Organon Laboratories, Pfizer, Roche, Schering Plough, Servier Laboratories, and UCB Pharma. Non-pharma funding: (2006) The European College of Neurospychopharmacology, the Federation of European Neuroscience Societies, GE Healthcare, and Medtronic. Membership: 5 European professional organisations (AEP, EANS, ECNP, EFNS, and FENS), two European patient organisations (EFNA and GAMIAN-Europe), and industrial partners. Country of registration: Belgium. Registration number: 864644340.

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NEUROLOGICAL CONDITIONS

European Brain Injury Society (EBIS) http://www.ebissociety.org President: Christine Croisiaux

Centre La Braise Rue de La Vigne 56 1070 Brussels Belgium

T: 0032-(0)2-522-20-03 F: 0032-(0)2-523-39-52 Email: ebis.secretariat@skynet.be

A European association dedicated to activities that support traumatic brain-injured people and victims of acquired cerebral lesions, covering anoxia, brain tumour, encephalitis, and stroke. Brings together a variety of patient associations and professionals involved in the field of brain injury.

“The EBIS exists thanks to the personal application of members who attach importance to making heard the point of view of people suffering from cranial trauma”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: Around 140 individual and institutional members (Belgium, Denmark, France, Germany, Greece, Ireland, Italy, Luxembourg, the Netherlands, Portugal, Spain, Sweden, Switzerland, and the UK). Country of registration: Belgium.

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CANCER

European CanCer Organisation (ECCO) http://www.ecco-org.eu Chief Executive Officer: Michel Ballieu

Avenue E. Mounier 83 B-1200 Brussels Belgium

T: 0032-(0)2-775-02-01 F: 0032-(0)2-775-02-00 Email: michel.ballieu@ecco-org.eu

Brings together all the disciplines involved in the research and treatment of cancer to ensure that all patients with cancer across Europe receive the best possible care. Although largely a clinical and academic-driven body (representing 18,000 experts involved in cancer research, treatment and care), patient groups are involved as sustaining members.

“From January 2008, the ECCO will be introducing a series of initiatives aimed at centring the patient interest at the core of its activities. The launch of the ECCO’s online Patient Section zone will represent a first step towards achieving this goal”

Geographic remit: Europe. Membership: 8 full members, 5 affiliated members, and 4 sustaining members. Full-time staff: 19 at headquarters. Volunteers: 1,000 (Board members, committee members and speakers).

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CANCER

European Cancer Patient Coalition (ECPC) http://www.ecpc-online.org Administrator: Michaela Geissler

Am Rothenanger 1b 85521 Riemerling Germany

T: 0049-(0)89-628-36-807 F: 0049-(0)1212-55-84-37-290 Email: info@ecpc-online.org

Objectives include increasing the influence of cancer patients over all European policies that affect our health, ensuring timely access to appropriate prevention, screening, early diagnosis treatment and care, and promoting the advancement of cancer research.

“The ECPC is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups (from the major to the rarer cancers). Nothing about us without us!”

Geographic remit: Europe. Pharma funding: 11 sustaining partners. Non-pharma funding: Core funding from the European School of Oncology, and research funding from the EU. Membership: Approximately 300 member organisations from over 30 countries. Full-time staff: None (2 part time). Volunteers: 5. Country of registration: The Netherlands. Registration number: 30211815.

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CANCER

European Cervical Cancer Association (ECCA) http://www.ecca.info President: Imelda Read

68 cours Albert Thomas 69008 Lyon France

T: 0033-(0)4-78-76-55-88 F: 0033-(0)4-78-76-55-97 Email: info@ecca.info

Aims to raise awareness about cervical cancer, and its prevention. Intends to improve public understanding of the importance of organised cervical screening. The ECCA message has three target audiences: the general public, medical professionals, and public health officials.

“The greatest tragedy with cervical cancer is that the majority of cervical cancer cases in Europe could be prevented through screening, and yet the disease remains a significant source of disease and death”

Geographic remit: Europe. Pharma funding: GSK, Novartis Pharma AG, and Sanofi Pasteur MSD. Non-pharma funding: The European Commission, and the Grand Lyon and Région Rhône-Alpes. Membership: National organisations in 26 European countries. Full-time staff: 4.

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CHILDREN

European Children’s Network (EURONET) http://www.europeanchildrensnetwork.eu Secretary General: Mieke Schuurman

Avenue des Arts 1-2 1210 Brussels Belgium

T: 0032-(0)2-217-01-86 F: 0032-(0)2-513-49-03 Email: europeanchildrenetwork@skynet.be

A coalition of networks and organisations campaigning for the interests and rights of children (defined in the 1989 UN Convention on the Rights of the Child as all people under 18 years of age). The EURONET members share a common concern that children's rights should be taken into account in all EU legislation, policies, and programmes that impact on children’s rights.

“More then 21% of children in the EU are living in relative poverty. Many are trafficked or sexually exploited. It is time to build a Europe for children, and to make children’s rights real”

Geographic remit: Europe. Non-pharma funding: Member organisations. Membership: 35 member groups (either national or trans-national NGOs, or networks of NGOs) based in 24 countries. Full-time staff: 1.5. Volunteers: 1.

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GENETIC / RARE DISEASES

European Chromosome 11q Network (11q Network) http://www.11q.org General Secretary: Tom Birle

Ahornstrasse 13 D-85241 Hebertshausen Germany

T: 0049-813-127-3387 F: 0049-813-127-3545 Email: familybirle@aol.com

Founded in 1997 as a network of families with children with anomalies on the long arm of chromosome 11 (11q). Enables parents to make contact, and information to be collected and exchanged. Follows and supports scientific developments regarding chromosome 11q disorders.

“The 11q Network has knowledge about the consequences of chromosome 11q disorders”

Geographic remit: Europe. Latest annual revenue: (2006) Under Euros 50,000. Non-pharma funding: Donations, and membership fees. Membership: Around 80 families. Full-time staff: None.

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DISABILITY

European Coalition for Community Living (ECCL) http://www.community-living.info Coordinator: Ines Bulic

c/o ENIL Gran Via Marques del Turia no 49, 7, 12a 46005 Valencia Spain

T: 0034-96-325-54-57 F: 0034-96-325-54-59 Email: coordinator@community-living.info

A cross-disability initiative that works towards the social inclusion of people with a disability by promoting the provision of highquality, comprehensive, community-based services as an alternative to institutionalisation. Encourages good practice in community living, and engages in monitoring and advocacy activities at European level. Founded in 2005.

“Across Europe, thousands of people with a disability spend many years—or even their entire lives—isolated in institutions. Comprehensive, highquality, community-based services that are available and accessible to all people with a disability are the only way that disabled people can be included in society, with rights and opportunities equal to those of other citizens”

Geographic remit: Europe. Pharma funding: None. Non-pharma funding: The Open Society Mental Health Initiative (OSMHI) of Budapest, Hungary. Membership: Organisations and individuals in over 20 European countries. Full-time staff: 1. Volunteers: Board and Advisory Council. Country of registration: Ireland. Registration number: 2975 (the ECCL is a project of the European Network on Independent Living).

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HIV / AIDS

European Coalition of Positive People (ECPP) http://www.ecpp.co.uk Executive Director: Colin Webb

2 Whitehorse Mews Westminster Bridge Road London, SE1 7QD UK

T: 0044-(0)20-7401-9942 F: 0044-(0)20-7401-9690 Email: office@ecpp.co.uk

A self-help organisation of, by, and for people living with HIV/ AIDS, hepatitis, or tuberculosis. Seeks to establish a democratic and accountable patient voice at a European level. Promotes patient involvement in the development of public policy, in delivery, and in the monitoring of services.

“Our ethos is one of self-help. We believe that people living with HIV/AIDS, hepatitis C, etc, should be central to the relevant debates about health and social policy. People have the right to information, backup, and role models” Geographic remit: Europe (and several African countries).

Membership: None.

Latest annual revenue: (2006) £332,000 [Euros 444,000].

Volunteers: Volunteers essential for ECCP activities.

Pharma funding: (2006) Abbott Laboratories, Bristol-Myers Squibb, the European Federation of Pharmaceutical Industries and Associations (EFPIA), GSK, Merck Sharp & Dohme, Pfizer, and Roche.

Country of registration: England and Wales.

Non-pharma funding: (2006) Comic Relief, the Elton John AIDS Foundation, the European Parliament, the Pfizer Foundation, and the World Health Organisation.

Full-time staff: 6.

Registration number: 1090117. Company: Private, limited by guarantee, no share capital, number 3850575 (UK).

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE PUBLIC HEALTH

European Community of Consumer Co-operatives (Euro Coop) http://www.eurocoop.coop

Secretary-General: Rodrigo Gouveia

Avenue de Tervueren 12, bte3 B-1040 Brussels Belgium

T: 0032-(0)2-285-00-70 F: 0032-(0)2-231-07-57 Email: info@eurocoop.coop

Represents to EU institutions the interests of consumer cooperatives and their 23 million consumer-members across 17 European countries. Operates in consumer food policy, environmental and ethical policy, and co-operative enterprises policy.

“The Euro Coop is a forum of exchange of information and best practices for its member organisations”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: 17 (from Bulgaria, Cyprus, the Czech Republic, Denmark, Estonia, Finland, Germany, Hungary, Italy, the Netherlands, Norway, Portugal, Romania, Slovakia, Spain, Sweden, and the UK).

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NEUROLOGICAL CONDITIONS

European Concerted Action and Research in Epilepsy (EUCARE) http://www.eucare.org

Programme Manager: Karen Lee-Donaldson

c/o International Bureau for Epilepsy 11 Priory Hall Stillorgan, Dublin 18 Ireland

T: 00353-1-210-8850 F: 00353-1-210-8450 Email: ibedublin@eircom.net

A joint initiative of the International League Against Epilepsy, the International Bureau for Epilepsy, and UCB Pharma. Intends to raise the profile of epilepsy across Europe through research and political activities. Has set a major goal of promoting epilepsy as a public health priority among governments and health authorities.

“EUCARE aims to provide a framework for all members of the epilepsy community take an active role in shaping epilepsy policy”

Geographic remit: Europe. Pharma funding: Educational grant from UCB Pharma. Membership: No formal membership.

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HEART DISEASE / CIRCULATORY

European Congenital Heart Disease Organisation (ECHDO) http://www.echdo.org Spokesperson: Hermine Nock

c/o BVHK Kasinostrasse 66 52066 Aachen Germany

T: 0049-241-912-332 F: 0049-241-912-333 Email: bvhk-aachen@t-online.de

Umbrella organisation formed to look after the interests of children and adults with congenital heart disease. Links parent and patient organisations with professionals. Works on common standards for all European patients, and educates about about care for adults with congenital heart disease. The network’s EUsupported information and communication platform expected to be online May/June 2008.

“Member organisations share knowledge and experiences, exchange examples of best practice, and work together to improve care and treatment”

Geographic remit: Europe. Membership: 16 national organisations from European countries (Austria, Belgium, Bulgaria, Estonia, Finland, Germany, Greece, Hungary, Ireland, Italy, Norway, Poland, Romania, Spain, Sweden, and the UK).

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DISABILITY

European Deafblind Network (EDbN) http://www.edbn.org Information and Communication Officer: Ricard Lopez

EDbN Secretariat Hotel d’Entitats de La Pau C/ Pere Verges, 1 despatx 10-2 08020 Barcelona Spain

F: 0034-93-331-4220 Email: edbn@sordoceguera.com

An organisation that brings together families, professionals and deaf-blind people. Committed to campaigning to promote the rights and interests of people who are deaf-blind. Runs an electronic group to share news and information, and to coordinate training and projects of common interest.

“The EDbN remains an organisation that involves professionals, families, and deafblind people at a European level. In the future, the key will be to work with, and provide opportunities for, networking for parents”

Geographic remit: Europe. Membership: Organisations, individuals, and healthcare professionals in 21 European countries (Austria, Belgium, Croatia, the Czech Republic, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Malta, the Netherlands, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None.

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DISABILITY

European Disability Forum (EDF) http://www.edf-feph.org Director: Carlotta Besozzi

39-41 Rue du Commerce B-1000 Brussels Belgium

T: 0032-(0)2-282-46-00 F: 0032-(0)2-282-46-09 Email: secretariat@edf-feph.org

A democratic organisation that represents over 50 million people with a disability in the EU in dialogue with the European Commission and other European authorities. Seeks to promote equal opportunities for people with a disability, and to advocate for their full access to fundamental and human rights.

“The EDF’s main tenth anniversary campaign in 2007, the gathering of one million signatures in favour of EU legislative measures combating disability discrimination, was so successful that we were able to deliver nearly 1.3 million signatures to the President of the European Commission in November 2007”

Geographic remit: Europe. Latest annual revenue: Within the range Euros 1m to 1.5m. Non-pharma funding: The European Commission, and membership fees. Membership: 26 national councils, 24 full member NGOs, 17 ordinary member NGOs, 46 associate members (no observer members at the moment), plus individual members. Full-time staff: 8. Volunteers: Annual trainee scheme (1-2 trainees per annum).

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GENETIC / RARE DISEASES

European Down Syndrome Association (EDSA) http://www.edsa.info

Email: info@edsa.info

Promotes the complete development of people with Down syndrome, regardless of racial, linguistic, religious, philosophical or political considerations.

“The EDSA seeks members from all the countries of Europe, whether or not they are in the European Community at this time”

Geographic remit: Europe. Membership: 30 national organisations in Europe (from all of the EU Member States, plus surrounding countries). Country of registration: Belgium.

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LEARNING DISABILITY

European Dyslexia Association (EDA) http://www.dyslexia.eu.com President: Michael Kalmár

Email: eda@kbnet.co.uk

Aims to raise awareness about dyslexia, to make information on the subject available to all, and to encourage research into the cause/s, diagnosis, intervention and prevention of dyslexia. Assists in developing support for dyslexic people in their educational social and cultural integration into society.

“The EDA is a partner in an exciting project in 2008 about teaching English as a second language, ‘Collaborative Additional Language Learning for Dyslexics’. The project uses expertise from across Europe to develop an abbreviated curriculum for delivery through the phone (pilot study results show a strong need for this)”

Geographic remit: Europe. Non-pharma funding: Project funding from the European Commission. Membership: Member associations in 22 European countries (Austria, Belgium, Croatia, Cyprus, the Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, the Netherlands, Norway, Poland, Portugal, Slovenia, Spain, Sweden, Switzerland, and the UK). Country of registration: Belgium.

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NEUROLOGICAL CONDITIONS

European Dystonia Federation (EDF) http://www.dystonia-europe.org Executive Director: Alistair Newton

69 East King Street Helensburgh, G84 7RE UK

T: 0044-(0)-1436-678-799 F: 0044-(0)-1436-678-799 Email: alistair@newton1.co.uk

Advocates for dystonia patients and their families at European level. Dystonia is a neurological movement disorder characterised by involuntary muscle contractions.

“The Federation acts in a coordinating role for its members, and deals with people, organisations, and aspects of dystonia advocacy not accessible to national groups”

Geographic remit: Europe. Membership: National organisations in 16 European countries. Country of registration: Belgium.

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REPRODUCTIVE / SEXUAL HEALTH

European Endometriosis Alliance (EEA) http://www.endometriosis.org/eea.html

Email: info@endometriosis.org

The European arm of endometriosis.org. Aims to help and support the estimated 16 million women in Europe who suffer from endometriosis.

“In May 2007, after several years of awareness raising in the European Parliament and European Commission by the EEA, the EU provided funds for work in the field of endometriosis. A lot of work in getting endometriosis officially recognised by the EU has now paid off ”

Geographic remit: Europe. Membership: 16 organisations in 13 European countries (Austria, Denmark, Finland, France, Germany, Ireland, Italy, Malta, the Netherlands, Norway, Portugal, Spain, Sweden, and the UK).

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FAMILIES AND HEALTH

European Family Therapy Association (EFTA) http://www.efta-europeanfamilytherapy.com President: Dr Arlene Vetere

55 The Avenue Mortimer Berkshire, RG7 3QU UK

T: 0044-(0)-118-933-2393 F: 0044-(0)-118-969-2299 Email: drarlenevetere@hotmail.com

Brings together individual practitioners, training institutes, and national family therapy organisations in Europe. Facilitates the exchange of ideas and experience, spreads information about family therapy, conducts training, and promotes research.

“Our mission is to develop systemic thinking and practice throughout Europe to the benefit of our communities”

Geographic remit: Europe. Membership: Includes national family therapy organisations in 22 European countries (Austria, Belgium, Bulgaria, Cyprus, the Czech Republic, Denmark, Finland, Germany, Greece, Hungary, Ireland, Italy, Macedonia, the Netherlands, Norway, Poland, Portugal, Serbia and Montenegro, Spain, Sweden, Switzerland, and the UK).

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GENETIC / RARE DISEASES

European Federation for Neurofibromatosis Associations (NF Europe) http://www.nfeurope.org President: Claire Webb

Slachthuisstraat 73 B-9100 Sint-Niklaas Belgium

T: 0032-(0)3-766-13-41 Email: info@nfeurope.org

A network of national neurofibromatosis family support groups in Europe. Provides information and support, raises public awareness, and encourages medical research into neurofibromatosis. Develops activities to increase the quality of life of families affected.

“Our first concern is to offer information in the appropriate languages, including addresses to contact for a chat with people dealing with the same concerns and sorrows (perhaps even in patients' own neighbourhoods). That way, there is no need for patients to feel alone, or to deal with it all by themselves”

Geographic remit: Europe. Non-pharma funding: The European Commission. Membership: 19 organisations in 18 European countries (Austria, Belgium, Bulgaria, Denmark, Finland, France, Germany, Greece, Ireland, Italy, the Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, and the UK). Volunteers: Most of NF Europe’s staff are volunteers.

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RESPIRATORY

European Federation of Allergy and Airways Diseases Patients Associations (EFA) http://www.efanet.org

Executive Officer: Susanna Palkonen

35 Rue du Congrès 1000 Brussels Belgium

T: 0032-(0)2-227-27-12 F: 0032-(0)2-218-31-41 Email: susanna.palkonen@efanet.org

Combines national patient associations specialising in asthma, allergy, and chronic obstructive pulmonary disease (COPD) for results at European level. Aims to improve the health and quality of life of Europeans with those diseases. Supports member organisations by sharing information and experiences to ensure that patients’ interests are served in a comparable way across Europe.

“The EFA is a European community of patient organisations that share the responsibility of reducing the frequency and severity of allergies, asthma, and COPD, minimising their societal impact, and improving the health-related quality of life of Europeans with these conditions”

Geographic remit: Europe. Latest annual revenue: (2006) Euros 253,000. Pharma funding: (2007) AstraZeneca, GSK, Novartis, and UCB Pharma. Non-pharma funding: (2006) Grants and membership fees. Main sponsors are the European Academy of Allergology and Clinical Immunology, and the European Commission. Membership: Member organisations in 17 European countries (Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Finland, France, Greece, Italy, Lithuania, Luxembourg, the Netherlands, Norway, Slovenia, Sweden, Switzerland, and the UK). Full-time staff: 2. Volunteers: 4-person Board.

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DISABILITY

European Federation of Associations of Burned Persons (EFAB) http://www.euroburnfederation.org President: Paul Villain

c/o Association des Brules de France 46, quai de la Loire F-75019 Paris France

T: 0033-(0)1-42-02-25-01 F: 0033-(0)1-42-40-37-20 Email: info@euroburnfederation.org

A voluntary organisation that aims to defend and gain recognition for the legal and social rights of burned people. Assists the medical community to provide best-quality care and support, and promotes rehabilitation.

“The EFAB will undertake any initiative to improve and harmonise the cause of burns survivors within the EU. To do so, the EFAB will inform and warn political leaders, public and private institutions, the media, and public opinion”

Geographic remit: Europe. Membership: 8 organisations (Austria, Belgium, France, Germany, the Netherlands, Portugal and the UK). Full-time staff: None. Volunteers: All activities conducted by volunteers.

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FAMILIES AND HEALTH MENTAL HEALTH

European Federation of Associations of Families of People with Mental Illness (EUFAMI ivzw) http://www.eufami.org

Secretary General: Kevin Jones

Diestsevest 100 B-3000 Leuven Belgium

T: 0032-(0)16-74-50-40 F: 0032-(0)16-74-50-49 Email: info@eufami.org

Seeks to achieve continuous improvement in mental health throughout Europe, to enable member associations to combine their efforts and act jointly at European level, and to assist these groups improve health conditions in their own areas. Founded in 1992.

“Strong economic and social reasons insist that the European Union should prioritise mental health and engage stakeholders who currently do not believe that they have an important role to play in protecting Europe’s mental health”

Geographic remit: Europe. Pharma funding: AstraZeneca, Eli Lilly, the European Federation of Pharmaceutical Industries and Associations (EFPIA), Janssen Cilag, and Pfizer. Membership: Over 45 national and regional member organisations in 27 European countries. Full-time staff: 1 (part-time staff also employed). Volunteers: 7-person Executive Committee.

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BLOOD DISORDERS

European Federation of Associations of Patients with Haemochromatosis (EFAPH) http://www.european-haemochromatosis.eu President: Jean Rialland

1, Boulevard Jeanne d’Arc F-35000-Rennes France

T: 0033-2-99-87-05-15 Email: efaph@club-internet.fr

Dedicated to raising public awareness of the condition, and emphasising the important of prevention, family screening, and early treatment. Supplies the medical profession with valuable information on the subject.

“The EFAPH believes that far more should be done to prevent haemochromatosis”

Geographic remit: Europe. Pharma funding: Novartis. Non-pharma funding: Annual membership fees. Membership: Patient associations in 13 European countries (Belgium, France, Germany, Hungary, Italy, Ireland, the Netherlands, Norway, Poland, Portugal, Spain, Sweden and the UK). Full-time staff: None. Volunteers: 5. Country of registration: France. Registration number: Ille et Vilaine Prefecture registration W 353 003746.

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GASTRO-INTESTINAL

European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) http://www.efcca.org Secretary: Micke Lindholm

Gropmorsvagen 28 10520 Tenala Finland

T: 00358-40-5778-179 F: 00358-19-2450-860 Email: micke.lindholm@pp.inet.fi

Aims to improve the wellbeing of the 1.2 million people with Crohn’s and colitis Europe-wide through working with (and for) national member associations, facilitating the exchange of information and the promotion of cross-border activities, and encouraging scientific research. Providing a European inflammatory bowel disease (IBD) patient perspective, the EFCCA works also with doctors, other healthcare professionals and stakeholders, the authorities, and with related organisations.

“Inequalities in health remain virtually Europe-wide, and, in working with and on behalf of the member national associations, primarily at the EU level, the EFCCA seeks to address the concerns of patients and their families to be involved in policy reviews and in research leading to improvements in quality of life and care for those with chronic conditions like inflammatory bowel diseases”

Geographic remit: Europe. Latest annual revenue: (2007) Approximately Euros 90,000.

Membership: 23 member associations representing over 100,000 patients and their families and friends.

Pharma funding: (2006-2007) Abbott, Centocor, Elan, Falk Foundation, Ferring Pharmaceuticals, Otsuka, PDL BioPharma, Schering Plough, Shire, and UCB Celltech.

Full-time staff: None.

Non-pharma funding: Falk Foundation, and annual subscriptions from member associations.

Registration number: 1096/97; revised 22/2/2006, number 459814543.

Volunteers: 2 delegates from each member association. Country of registration: Belgium.

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DISABILITY

European Federation of Hard of Hearing People (EFHOH) http://www.efhoh.org General Secretary: Jan Lamby

c/o Horselskadades Riksforbund Box 6605 SE-113 84 Stockholm Sweden

T: 0046-8-457-5500 F: 0046-8-457-5503 Email: efhoh@hrf.se

A non-profitmaking, non-political, and non-sectarian federation of national associations for hard-of-hearing and late-deafened people, parents' organisations, and professional organisations. The only body representing all of the 81.5 million hard-of-hearing adults in Europe.

“Among the most important tasks for the EFHOH is raising awareness about the profile, needs, abilities and preferences of hard-of-hearing individuals in the modern world. We focus not just on identifying and lowering existing barriers, but equally so on preventing new barriers to opportunity and fulfilment from being raised”

Geographic remit: Europe. Latest annual revenue: (2006) Euros 11,000. Pharma funding: None. Non-pharma funding: Sponsorship from Bernafon, GN Resound, Oticon, Phonak, Pro Audito Winterthur, Siemens Audiologische Technik, and Widex. Membership: 33 organisations in 22 European countries. Full-time staff: None. Volunteers: Includes a 5-member Board. All work in the EFHOH is done on a voluntary basis.

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COMPLEMENTARY / ALTERNATIVE MEDICINES

European Federation of Homeopathic Patients’ Associations (EFHPA) http://www.efhpa.com

Secretary: Gabriella De Angelis

Chauseé de Bruxelles 132 Box 1 1190 Brussels Belgium

T: 0032-(0)2-672-33-51 F: 0032-(0)2-672-13-63 Email: gabriella.deangelis@nbcuni.com

Promotes the harmonisation of the practice of homeopathy in Europe, and advocates its integration into European healthcare. Represents patients and users of homeopathic medicines, and local, regional, and national groups sharing the same ideals about homeopathy. Defends the rights and interests of patients in Europe who use or seek homeopathic treatment.

“We represent the voice of the homeopathic patient in Europe, and defend the practice of homeopathy within medicine with the European authorities”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: Member associations in 15 European countries (Austria, Belgium, Bulgaria, France, Germany, Greece, Hungary, Italy, the Netherlands, Norway, Poland, Romania, Slovakia, Switzerland, and the UK). Volunteers: 5-person Board. Country of registration: Belgium.

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE

European Federation of National Organisations working with the Homeless (FEANTSA) http://www.feantsa.org Director: Freek Spinnewijn

194 Chaussée de Louvain 1210 Brussels Belgium

T: 0032-(0)2-538-66-69 F: 0032-(0)2-539-41-74 Email: office@feantsa.org

A federation that brings together about two thirds of the not-forprofit sector working with people who are homeless in Europe. Carries out research, advocacy, and policy activities. Has developed a broad programme of work on health and homelessness, and hosts the European Network of Homeless Health Workers.

“The FEANTSA works to be/create the most effective means of ending homelessness in Europe”

Geographic remit: Europe. Non-pharma funding: Core-funded by the European Commission. Membership: Over 100 members in about 30 European countries (including 25 of the 27 EU Member States). Full-time staff: 6. Country of registration: Belgium. Registration number: 14901/89.

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NEUROLOGICAL CONDITIONS

European Federation of Neurological Associations (EFNA) http://www.efna.net Coordinator: Evelyn Sipido EFNA Secretariat, EFNS Branch Office c/o Dept of Pharmacology University of Florence Viale Pieraccini 6, 50139 Firenze Italy

T: 0039-055-436-2098 F: 0039-055-427-1280 Email: info@efna.net

Brings together European umbrella organisations of neurological patient advocacy groups in a ‘partnership for progress’. Aims to improve the quality of life for people with a neurological disorder, promote better access to information, increase public awareness, and enhance the priority given to neurology by policymakers.

“The EFNA wants to establish a network of Members of the European Parliament which will be cross-nation and cross-party, and will be the voice of people with neurological illnesses within the European Parliament”

Geographic remit: Europe. Pharma funding: (2006) Merck Serono. Non-pharma funding: The European Commission, and Medtronic Foundation. Membership: 16 affiliated patient organisations.

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OLDER PEOPLE

European Federation of Older Persons (EURAG) http://www.eurag-europe.org Secretary General: Jaap van der Spek

Stubenring 2/4A 1010 Vienna Austria

T: 0043-1-512-1100 F: 0043-1-512-1100-30 Email: office@eurag-europe.org

A non-profit and non-religious European organisation that represents millions of older people in Europe. Promotes older people’s quality of life on societal, social, and political levels. Exchanges information and experience to strengthen the role and the possibilities of older people in Europe.

“The EURAG represents the interests of the older generation in Europe, sets up working groups and committees on topical issues, and launches proposals and motions to the European Parliament, the European Commission, the Council of Europe, and the World Health Organization, as well as other organisations concerned with the older generation”

Geographic remit: Europe. Non-pharma funding: Membership fees, and EU-funded projects. Membership: Over 130 organisations in 32 European countries. Full-time staff: 3. Volunteers: 1. Country of registration: Luxembourg.

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CHILDREN DISABILITY FAMILIES AND HEALTH

European Federation of Parents of HearingImpaired Children (FEPEDA) http://www.fepeda.net President: Isabel de Rojas

c/o FIAPAS Nunez de Balboa, 3-1 28001 Madrid Spain

T: 0034-91-576-51-49 F: 0034-91-576-57-46 Email: fiapas@fiapas.es

Brings together national associations of parents of hearing-impaired children, encourages cooperation and the exchange of information, and works to improve the quality of life of deaf and hearing-impaired children and their families.

“The FEPEDA should participate in the design of policies, and in the decisionmaking process affecting hearingimpaired children, because nobody knows their needs better than we do”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: Member associations in 20 European countries (Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Ireland, Italy, Lithuania, Luxembourg, the Netherlands, Poland, Portugal, Spain, Sweden, Switzerland, and the UK). Country of registration: Luxembourg.

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COMPLEMENTARY / ALTERNATIVE MEDICINES

European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM) http://www.efpam.org Secretary: Colette Pradelle

EFPAM Secretariat La Commanderie F-10140 Amance France

T: 0033-3-2541-3627 F: 0033-3-2541-4920 Email: colette.pradelleapma@wanadoo.fr

Founded in 2000, the EFPAM aims to represent the interests of patients who want to use anthroposophic medicine (a form of complementary medicine), together with, or instead of, other medical treatments. Lobbies European, international and national institutions on behalf of access, affordability, and availability. Works to extend the right to reimbursement by health insurance of all anthroposophic medicine (in conformity with the principle of the equality of citizens). “The EFPAM demands that European citizens can freely choose their own therapies without undue hindrance”

Geographic remit: Europe. Latest annual revenue: (2006) Under Euros 50,000. Non-pharma funding: Membership fees, and sponsorship. Membership: Patient associations in 14 European countries (Austria, Belgium, Denmark, Finland, France, Germany, Italy, the Netherlands, Norway, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Country of registration: France. Registration number: Registered at the Tribunal d’ Instance, Strasbourg.

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SKIN

European Federation of Psoriasis Associations (EUROPSO) http://www.europso.eu Secretary: André Cats

Kimwierde, 420 NL- 1353 EZ Almere The Netherlands

T: 0031-365-313-052 Email: info@europso.eu [after April 2008] info@europso.org [before April 2008]

An umbrella organisation for psoriasis patient associations in Europe. Combats discrimination against psoriasis sufferers, encourages research, and aims to improve the treatment of psoriasis and to obtain recognition from the EU.

“We advocate in favour of equal treatment, opportunity, and information for all psoriasis patients in Europe”

Geographic remit: Europe. Latest annual revenue: (2007) Less than Euros 10,000 (revenue fluctuates from year to year). Pharma funding: Variable from year to year. Non-pharma funding: Membership fees. Membership: 18 national or regional patient associations (from Belgium, Bulgaria, Denmark, Estonia, Finland, France, Germany, Italy, the Netherlands, Norway, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden, and Switzerland). Full-time staff: None. Volunteers: 8-person Executive Board.

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CARERS FAMILIES AND HEALTH

European Federation of Unpaid Parents and Carers at Home (FEFAF)

Secretary General: Marielle Helleputte

T: 0032-2-771-23-34 Email: mehelleputte.skynet.be

An umbrella organisation of national or regional associations of women working within the family. Represents and defends at EU level the interests of women who choose to prioritise the care of their children, or their elderly or disabled relatives.

“We are trying to get European institutions to accept and recognise the concept of carers as ‘workers who are active but unpaid’ ”

Geographic remit: Europe. Membership: 18 national associations and federations that share the same goals.

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GENETIC / RARE DISEASES

European Galactosaemia Society (EGS) http://www.galactosaemia.com Secretary: Maaike van Kempen

c/o Jeroen and Maaike van Kempen Zandoogjelaan 4 NL-5691 RJ Son The Netherlands

T: 0031-499-477-509 F: 0031-499-464-383 Email: secretary@galactosaemia.eu

A support group for people with the rare metabolic disease galactosaemia. Shares information, promotes awareness, and encourages European research into the disease. Lobbies for better disclosure in the labelling of foods and pharmaceuticals, and for changes in European law which affect the galactosaemic patient.

“Although galactosaemia is a very rare disease, the EGS represents a relatively high number of galactosaemia patients in Europe—over 800”

Geographic remit: Europe. Membership: Member associations in 13 European countries (Austria, Belgium, Denmark, Estonia, France, Germany, Ireland, Italy, the Netherlands, Norway, Spain, Switzerland and the UK). Country of registration: The Netherlands.

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GENETIC / RARE DISEASES

European Gaucher Alliance http://www.gaucheralliance.org Convenor of the Gaucher Alliance: Tanya Collin-Histed

3 Bull Pitch Dursley Gloucestershire, GL11 4NG UK

T: 0044-(0)-1453-549-231 F: 0044-(0)-1453-549-231 Email: ga@gaucher.org.uk

Aims to exchange information about the treatment and management of Gaucher disease, encourage research, promote the formation of Gaucher patient associations in Europe, and represent the interests of Gaucher sufferers to the European Commission and other relevant EU organisations.

“What remains vital is the need for information about the disease, and about how it affects families. Also important is information on how to access knowledgeable physicians and scientists, and—above all—details about treatments that can alleviate the suffering of patients”

Geographic remit: Europe. Pharma funding: None. Non-pharma funding: None. Membership: National organisations in 26 countries. Full-time staff: None. Volunteers: 10.

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GENETIC / RARE DISEASES

European Genetic Alliances Network (EGAN) http://www.egan.eu Secretary General: Dr Cor Oosterwijk

Vredehofstraat 31 3761 HA Soestdijk The Netherlands

T: 0031-(0)35-603-4040 F: 0031-(0)35-602-7440 Email: egan@egan.eu

As the European component of the International Genetic Alliance (IGA), the EGAN is a network of national patient alliances and European disease-specific patient organisations working together for a patient voice in the medical and health-research policies that might allow patients to benefit from genetics, genomics, and biotechnology through early detection and therapy development.

“The EGAN’s mission is to seek a world in which genetic, multifactoral, and congenital disorders are understood, effectively treated and/or prevented, and the people affected are adequately supported”

Geographic remit: Europe. Latest annual revenue: Within the range Euros 50,000 to 500,000. Non-pharma funding: The European Commission, and public funds. Membership: 6 regional/national alliances (Eastern Europe, Germany, Italy, the Netherlands, the UK, and Sweden), and about 20 European disease-specific patient organisations. Full-time staff: 6. Volunteers: 5-10.

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BLOOD DISORDERS

European Haemophilia Consortium (EHC) http://www.ehc.eu President: Dr Hubert K Hartl

Avenue de Tervuren 402 B-1150 Brussels Belgium

T: 0032-(0)2-761-66-27 / 0043-676-530-33-00 F: 0032-(0)2-777-05-10 Email: info@ehc.eu / office@ehc.eu

An umbrella organisation for haemophilia societies and associations in Europe. Aims include the improvement of diagnostic and treatment facilities, ensuring the adequate supply of safe factor concentrates, promotion of patients’ rights, stimulating research, and following and influencing developments in European health policy.

“There is a wide disparity of access to treatments across the EU, as governments take different approaches to treatment provision”

Geographic remit: Europe. Pharma funding: Project funding, and unrestricted grants from the pharmaceutical industry. Non-pharma funding: Donations from public institutions, and membership fees. Membership: 44 national associations. Full-time staff: None. Volunteers: 10. Country of registration: Belgium. Registration number: AISBL number 887.106.966.

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NEUROLOGICAL CONDITIONS

European Headache Alliance (EHA) President: Audrey Craven

c/o Migraine Association of Ireland Senior House, All Hallows College, Gracepark Road Drumcondra, Dublin 9 Ireland

T: 00353-1-806-4121 F: 00353-1-806-4122 Email: audreycraven@migraine.ie

Aims to unite and strengthen the voice of people affected by headache across Europe. Works to improve access to appropriate diagnosis and adequate treatment for people with a headache disorder.

“The purpose of the EHA—it’s aims and objectives—are primarily to coordinate the work of national patient organisations, give them a unified, stronger, and more cohesive voice in Europe, raise awareness of headacherelated issues throughout Europe, promoting early diagnosis and access to appropriate treatment through several lines of action—all directed at increasing the awareness of headache”

Geographic remit: Europe. Membership: Member associations in 9 European countries (Finland, Ireland, Italy, the Netherlands, Norway, Serbia, Spain, Switzerland and the UK).

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OLDER PEOPLE PUBLIC HEALTH

European Healthy Ageing Advocacy Forum (EHAAF) http://www.ehaaf.org

Brings together organisations that take a leading role in representing the interests of older people in Europe (or have an interest in promoting healthy ageing in all age groups). Shares best practice amongst advocacy groups and charitable organisations. Publishes information, conducts workshops, and holds political discussions with European institutions.

“The Forum provides impetus for initiatives focused on supporting and planning for longer, healthier, and more productive lives for today’s older and larger European population”

Geographic remit: Europe. Pharma funding: Pfizer. Membership: 8 member organisations from 8 European countries (Austria, the Czech Republic, France, Germany, Greece, Ireland, Italy, and Spain).

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HEART DISEASE / CIRCULATORY RESPIRATORY

European Heart and Lung Transplant Federation (EHLTF) http://www.ehltf.info Chairman: Terry Mangan

69 Landsdowne Park Dublin 16 Ireland

T: 00353-1-495-0904 F: 00353-1-495-1959 Email: terrymangan@gmail.com

Formed in 1994 as an umbrella group for European heart-and-lung transplant associations. Organises a biannual European heart-andlung transplant games to help raise donor awareness.

“It is unacceptable that patients are denied a life-saving organ transplant because a country’s procurement and donation process is poorly administered”

Geographic remit: Europe. Pharma funding: The pharmaceutical industry. Non-pharma funding: Games capitation charge, and membership fees. Membership: 16 national organisations in 15 European countries (Austria, Belgium, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, the Netherlands, Norway, Poland, Sweden, Switzerland, and the UK). Full-time staff: None. Volunteers: 6-person Management Committee. Country of registration: Belgium. Registration number: Numero d'enterprise, 461 644 378.

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GENETIC / RARE DISEASES HEART DISEASE / CIRCULATORY

European Heart Network (EHN) http://www.ehnheart.org Director: Susanne Logstrup

Rue Montoyer 31 1000 Brussels Belgium

T: 0032-(0)2-512-91-74 F: 0032-(0)2-503-35-25 Email: info@ehnheart.org

An alliance of heart foundations and other similar NGOs that plays a leading role in the prevention and reduction of cardiovascular disease through advocacy, networking and education. Influences European policymakers in favour of a heart-healthy lifestyle, disseminates information, encourages research, and nurtures ties between groups concerned with cardiovascular disease prevention.

“Changing lifestyle is not a matter for the individual alone—structural changes are also needed”

Geographic remit: Europe. Latest annual revenue: Within the range Euros 50,000 to 500,000. Non-pharma funding: Core funding from member organisations. Membership: 31 member organisations in 26 countries. Full-time staff: 4. Volunteers: Not applicable. Country of registration: Belgium. Registration number: 16416/93.

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GENETIC / RARE DISEASES NEUROLOGICAL CONDITIONS

European Huntington’s Disease Network (EHDN) http://www.euro-hd.net Administrator: Jamie Levey

EHDN Central Coordination 17, rue Monge 75005 Paris France

T: 0033-6-8255-7601 F: 001-631-792-1218 Email: jamie@euro-hd.net

A platform to enable professionals and people affected by Huntington’s disease (and their relatives) to work together throughout Europe. Its European HD-Registry functions as an infrastructure for clinical trials, listing people who might be interested in participating in studies, and tracking how affected people and their relatives are doing.

“The EHDN is a true network that provides low-threshold (native language!) support. The Network is an infrastructure for large-scale clinical trials, and an IT platform for communication tools (in the respective native languages), and for e-trials”

Geographic remit: Europe. Non-pharma funding: High-Q [a private philanthropic US foundation]. Membership: 482 individual members in 16 European countries (Austria, Belgium, the Czech Republic, Denmark, Finland, France, Germany, Italy, the Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, and the UK).

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GENDER HEALTH

European Institute of Women’s Health (EIWH) http://www.eurohealth.ie Director General: Peggy Maguire

33 Pearse Street Dublin 2 Ireland

T: 00353-1-671-5691 F: 00353-1-671-5662 Email: info@eurohealth.ie

Established in 1996 to ensure that women’s health issues appear on the European agenda. Encourages the European Commission and Member States to target women through information and education programmes, and to ensure that women are involved in policy development. Promotes gender equity in public health, research, and social policies across Europe.

“The EIWH urges the European Commission and Member States to introduce a gender perspective in health policy, collect gender-specific data, and set appropriate health indicators and targets to record the condition of women’s health in the EU” Geographic remit: Europe.

Full-time staff: 1.

Latest annual revenue: Within the range Euros 50,000 to 500,000.

Registration number: 12184.

Non-pharma funding: Project funding from the EU, sponsorship in kind, and unrestricted educational grants.

Company: Company registered by Guarantee, no shares, number 8211291.

Membership: Supported by a Board of Directors and a European Advisory Council (EAC) composed of organisations and individuals from across Europe with diverse expertise (including, in particular, health policy and gender and women’s health).

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RENAL

European Kidney Health Alliance (EKHA) http://www.ekha.eu Permanent Brussels Representative: Anna Rouillard

9-13 Rue D'Idalie 1050 Brussels Belgium

T: 0032-(0)2-639-62-30 F: 0032-(0)2-644-90-17 Email: info@ekha.eu

An alliance of not-for-profit organisations, representing the key stakeholders in kidney health issues in Europe. Provides objective and scientifically sound advice and information to the EU regarding the identification of the most effective medical and social research projects to deliver real and effective progress in therapy, and tangible benefits to kidney patients. Maintains the dialogue with the EU to promote best practice in providing treatment and care to kidney patients.

“The EKHA takes a multidisciplinary approach involving patients and their families, doctors and nurses, researchers, and other healthcare professionals who work cooperatively for sustained decrease in kidney disease (and its consequences) in Europe”

Geographic remit: Europe. Membership: 4 (3 European umbrella groups and one international body).

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RENAL

European Kidney Patients’ Federation (CEAPIR) http://www.ceapir.eu President: Nadine Stohler

c/o the Irish Kidney Association Donor House, Block 43A Parkwest, Dublin 12 Ireland

T: 00353-1-6205-306 F: 00353-1-6205-366 Email: info@ceapir.org

Aims to raise end-stage renal disease (ESRD) onto the EU public-health agenda. Also promotes the well-being, treatment, and living conditions of ESRD patients, exchanges information with bodies involved in renal therapy, and works to increase public awareness of organ donation and transplantation.

“Campaigns are undertaken at European Parliament level and in all other appropriate forums”

Geographic remit: Europe. Pharma funding: Has an agreed policy for financial involvement with industry. Membership: 21 national kidney patients’ associations in Europe. Full-time staff: None. Volunteers: 5-person Executive Committee.

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ARTHRITIS

European League Against Rheumatism (EULAR) http://www.eular.org Patient contact: Heinz Marchesi and Florian Klett

Seestrasse 240 CH-8802 Kilchberg Switzerland

T: 0041-44-716-30-30 F: 0041-44-716-30-39 Email: eular@eular.org

Represents patient associations, health professional bodies, and scientific societies of rheumatology in Europe. Aims to stimulate, promote, and support research, prevention, and the treatment and rehabilitation of rheumatic disease.

“The EULAR’s patient associations (including PARE—People With Arthritis/Rheumatism in Europe) are promoting the development of userled organisations on a national, as well as an international, level”

Geographic remit: Europe. Non-pharma funding: Membership fees from corporate members. Membership: 31 national patient associations, 44 scientific member societies, 4 allied health professional associations, and 31 corporate members.

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DISABILITY

European League of Stuttering Associations (ELSA) http://www.stuttering.ws Chairman: Edwin Farr

31 Grosvenor Road Jesmond Newcastle-upon-Tyne, NE2 2RL UK

T: 0044-(0)-191-281-8003 F: 0044-(0)-191-281-8003 Email: elsa.europe@totalise.co.uk

An umbrella group for national stuttering associations in Europe. Aims to exchange information and experiences, represent the interests of stutterers with the relevant political and professional bodies, and promote the idea of self-help.

“The most powerful tools in the ELSA’s exchange work are the European seminars which bring together Board members of the national stuttering organisations and other interested delegates and professionals working in the field. Each seminar is devoted to a particular topic”

Geographic remit: Europe. Non-pharma funding: The European Commission. Membership: 24 member associations in 23 European countries (Austria, Belgium, Bulgaria, Croatia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Poland, Spain, Sweden, Switzerland, and the UK).

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LIVER DISEASE

European Liver Patients Association (ELPA) http://www.elpa-info.org President: Nadine Piorkowsky

F. De Renesselaan 57 B-3800 Sint-Truiden Belgium

T: 0049-(0)2-225-18-476 [for president] Email: contact@elpa-info.org

Launched in April 2005 to further the interests of people with liver disease. Aims include promoting awareness and prevention, and raising the relatively low profile of liver disease (as compared with other areas of medicine, such as heart disease).

“Not only are millions infected with either hepatitis B or C, but the current lack of awareness and appropriate screening means that the great majority don’t even know they are infected”

Geographic remit: Europe. Pharma funding: Donations and unrestricted grants from Bristol-Myers Squibb, Gilead, Novartis, Roche, and Schering Plough. Non-pharma funding: Membership fees. Membership: 20 member organisations in 14 countries. Country of registration: Belgium.

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AUTO IMMUNE / IMMUNE DISEASES

European Lupus Erythematosus Federation (ELEF) http://www.elef.rheumanet.org Secretary: Anthony Bonello

8 Legge Lane Coseley West Midlands, WV14 8RQ UK

T: 00356-(0)-2131-1310 F: 00356-(0)-2131-1310 Email: elef@rheumanet.org

An umbrella group for national lupus groups in Europe. Collects information on lupus, encourages and undertakes surveys and research related to the disease, gains representation on European or international bodies to the benefit to ELEF members, and helps to establish new national groups.

“Our 2008 Common Cause project should bring awareness and understanding to our cause throughout Europe, and should also lead to new ways of solving some of the most important problems lupus patients currently face. All lupus patients in Europe will speak with one voice”

Geographic remit: Europe. Latest annual revenue: Less than Euros 20,000. Membership: 20 lupus groups from 18 European countries, representing around 30,000 patients (Belgium, Cyprus, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Malta, the Netherlands, Norway, Portugal, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Volunteers: All individuals involved with ELEF are volunteers. Country of registration: England and Wales. Registration number: 803768.

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GENDER HEALTH

European Men’s Health Forum (EMHF) http://www.emhf.org Director: Ericke Savoye

Rue de l’Industrie 11 B-1000 Brussels Belgium

T: 0032-(0)2-234-30-58 F: 0032-(0)2-230-33-00 Email: office@emhf.org

A European umbrella organisation dedicated to improving men’s health. The Forum engages in awareness-raising campaigns, and actively contributes to European public health and social policy debates. Participates in research development, and in key initiatives aimed at building a healthier future for men and society.

“Many still assume that health is predominately a female concern”

Geographic remit: Europe. Pharma funding: (2007) Includes BayerSchering, Novartis, Pfizer, and Roche. Non-pharma funding: (2007) Sponsors include Clinical Solutions, the European Union, GE Healthcare, Post Europe, and the Union of European Football Associations. Membership: 23 organisations in 19 countries (including Austria, Belgium, Denmark, Finland, France, Germany, Hungary, Ireland, Norway, Slovakia, Spain, Switzerland, and the UK). Full-time staff: 3 full-time equivalent. Volunteers: 9 Board members. Country of registration: Belgium. Registration number: BE 15747/2002.

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NEUROLOGICAL CONDITIONS

European Multiple Sclerosis Platform (EMSP) http://www.ms-in-europe.org Secretary General: Christoph Thalheim

Rue Auguste Lambiotte 144/8 B-1030 Brussels Belgium

T: 0032-(0)2-305-80-12 F: 0032-(0)2-305-80-11 Email: christoph.thalheim@emsp.org

Exchanges and disseminates information on multiple sclerosis (MS), encourages research into the condition, promotes the development of joint-action programmes with the participation of national MS societies in Europe, and acts as a focal point for liaison with the institutions of the EU and other European organisations.

“We wish to ensure that the ‘European Code of Good Practice in MS’ (representing the current ‘state of the art’ in relation to all aspects of MS) will be understood and accepted as a major guidance tool for more equity in the management of MS throughout Europe ” Geographic remit: Europe. Pharma funding: (2007) Biogen Idec, GSK, Novartis, Pfizer, Sanofi-Aventis, Schering AG, Serono, and Teva. Non-pharma funding: (2007) Coloplast, Ernst & Young, the European Commission, Loyens, Pfizer Foundation, and Tarmak. Membership fees.

Luxembourg, Malta, the Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: 1. Volunteers: 7-person Executive Committee.

Membership: Member societies in 30 European countries (Austria, Belgium, Bosnia-Herzegovina, Croatia, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania,

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CANCER

European Myeloma Platform (EMP) http://www.emp-myeloma.eu Secretary: Lia van Ginneken-Noordman

Zonneweeldelaan 23/32 B-3600 Genk Belgium

T: 0032-(0)2-476-31-06 F: 0032-(0)2-477-62-10 Email: EMP-office@uzbrussel.be

A ‘patient-for-patient’ support network for myeloma patients in Europe. Independent of commercial or political influence, the EMP aims to make treatments and medication more accessible, to provide access to information on new and current clinical trials, to stimulate and support research, and to exchange information and to collaborate with European myeloma patient organisations.

“Over 31,000 people in Europe are affected by this disease at any one time”

Geographic remit: Europe. Non-pharma funding: The EMP states that it is independent of political and commercial influence. Membership: Members in 8 European countries (Austria, Belgium, Denmark, France, Germany, the Netherlands, Portugal, and Switzerland). Volunteers: 10. Country of registration: Belgium. Registration number: 883 004 262.

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ARTHRITIS CHILDREN

European Network for Children with Arthritis (ENCA) http://www.enca.org ENCA Secretary: Caroline Cox

c/o Children’s Chronic Arthritis Association, Ground Floor Amber Gate, City Wall Road Worcester, WR1 2AH UK

T: 0044-(0)-1905-745-595 F: 0044-(0)-1905-745-703 Email: secretary@enca.org

An informal network of parent support groups and national juvenile idiopathic arthritis (JIA) associations in Europe. Exchanges information, promotes common projects at European level, and creates informal networks and regular exchanges between associations.

“Over 31,000 people in Europe are affected by this disease at any one time”

Geographic remit: Europe. Non-pharma funding: Membership fees. Membership: 8 member associations in 8 European countries (Belgium, Denmark, France, Germany, Italy, the Netherlands, Portugal, and the UK).

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BLOOD DISORDERS

European Network for Rare and Congenital Anaemias (ENERCA) http://www.enerca.org

Project Manager: Helen Segura

Hospital Clinic I Provincial Calle Villaroel 170, 4, 2 08036 Barcelona Spain

T: 0034-934-515-950 F: 0034-932-275-451 Email: enerca@enca.org

Aims to improve knowledge about the diagnosis and the clinical treatment of rare anaemias. The ENERCA database on rare anaemias can be used both by healthcare professionals and by patients (and their families and/or carers).

“A vicious cycle is nearly always produced in the process of diagnosing rare anaemias. The patient feels ill, goes to the doctor, who diagnoses anemia and prescribes iron. But the patient continues to feel ill and returns to the doctor. The ENERCA provides useful information to increase knowledge about rare anaemias, and to help doctors find a solution to the clinical problem”

Geographic remit: Europe. Latest annual revenue: Total 3-year budget of Euros 1.1m. Non-pharma funding: Co-funded by the Catalan government and the EC’s Directorate General for Health and Consumer Protection. Membership: 12 beneficiaries from 7 European countries (Belgium, Cyprus, France, Germany, Italy, Portugal, and Spain).

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CHILDREN NEUROLOGICAL CONDITIONS

European Network for Research on Alternating Hemiplegia in Childhood (ENRAH) http://www.enrah.net Director: Dr Tsveta Schyns

Tivoligasse 70/10 1120 Vienna Austria

T: 0043-(0)1-920-00-75 F: 0043-(0)1-920-00-75 Email: ts@enrah.net

A patient-driven non-profit organisation that aims to encourage research into alternating hemiplegia of childhood (AHC and other related rare paediatric neurological diseases) by bringing patients and their families together with clinicians and researchers. Runs a patient-accessible Registry of information on AHC and related conditions that can contribute to research and improve the care and health of AHC patients.

“The ENRAH combines relevant expertise to create the interface for sustainable research and the development of new treatments for rare paediatric neurological diseases”

Geographic remit: Europe. Latest annual revenue: (2006) Euros 73,000. Non-pharma funding: The European Commission, and membership fees. Looking to broaden its revenue base. Membership: AHC patient organisations in 7 European countries (France, Denmark, Germany, Italy, the Netherlands, Spain, and the UK). Full-time staff: 1. Country of registration: Austria. Registration number: ZVR 542743764.

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ADDICTION PUBLIC HEALTH

European Network for Smoking Prevention (ENSP) http://www.ensp.org Director: Francis Grogna

Chaussee d’Ixelles 144 1050 Brussels Belgium

T: 0032-(0)2-230-65-15 F: 0032-(0)2-230-75-07 Email: info@ensp.org

An international nonprofitmaking organisation that promotes greater coherence in smoking-prevention activities, and encourages the adoption of comprehensive tobacco control policies at national and European levels. Facilitates the activities of national coalitions and specialised smoking prevention networks.

“The ENSP evolves and adapts, ensuring the continued development of networking on a pan-European scale among non-profit organisations, in order to increase the costeffectiveness and efficiency of smoking prevention activities on a non-governmental level”

Geographic remit: Europe. Latest annual revenue: (2006) Euros 654,000. Non-pharma funding: (2006) The European Commission, and membership fees. Membership: Around 600 member organisations in 27 European countries (Austria, Belgium, Bulgaria, Cyprus, the Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: 4. Country of registration: Belgium. Registration number: 16377/97.

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MENTAL HEALTH

European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP) http://www.enusp.org

Chair and Interim Secretary: Mary Nettle

Zabel-Kruger-Damm 183 D-13469 Berlin Germany

T: 0049-30-8596-3706 Email: desk@enusp.org

The only grassroots umbrella organisation on a European level that unifies national organisations of people who are, or have been, receiving psychiatric services. Provides direct representation to these people.

“The ENUSP attempts to influence policy at a European level, and maintains contacts with other international organisations active in the field of mental health”

Geographic remit: Europe. Latest annual revenue: Less than Euros 10,000. Non-pharma funding: A limited number of donations and membership fees. Membership: National, regional and local organisations in around 50 countries. Full-time staff: None. Volunteers: All staff are volunteers. Country of registration: The Netherlands and Germany. Registration number: Not-for-profit status.

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ADDICTION PUBLIC HEALTH

European Network of Quitlines (ENQ) http://www.enqonline.org Project Manager: Alice Roberts

211 Old Street London, EC1V 9NR UK

T: 0044-(0)20-7251-1551 Email: a.roberts@quit.org.uk

An initiative that aims to maximise collaboration between EU Member States in tobacco control and smoking cessation. Promotes and supports European quitlines as a public health intervention, and assists those establishing new quitlines. Raises the quality of quitline services by sharing expertise, experience, modes of best practice, and by disseminating the evidence base.

“The ENQ has a diverse stakeholder community and audience, and addresses the needs of our stakeholders at an EU level. Our individual members in each Member State address the needs of local smokers, smoking-cessation health professionals, and national public health authorities”

Geographic remit: Europe. Non-pharma funding: The European Commission. Membership: 29 member organisations in 28 European countries (Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, the Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: 1.

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DISABILITY

European Network on Independent Living (ENIL) http://www.enil.eu Administrator: Elisabeth Masegosa

Gran Vía Marqués del Turia, 49, 7º., 12ª 46005 - Valencia Spain

T: 0034-96-325-54-57 F: 0034-96-325-54-59 Email: secretariat@enil.eu

A network of organisations that promote an understanding of independent living in Europe. Develops resource materials, facilitates information sharing, works on developing European concepts, principles, and runs educational events, seminars, and workshops.

“Independent Living is a philosophy and a movement of people with disabilities who work for equal rights and equal opportunities, self-respect, and self-determination”

Geographic remit: Europe. Non-pharma funding: Membership fees, and the Social Welfare Government of Valencia, Spain. Full-time staff: 2.

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NEUROLOGICAL CONDITIONS

European Neuro Muscular Centre (ENMC) http://www.enmc.org Research Manager: Annette Boersen

Lt. Gen. Van Heutzslaan 6 3743 JN Baarn The Netherlands

T: 0031-(0)35-54-80-481 F: 0031-(0)35-54-80-499 Email: enmc@enmc.org

An international research support organisation for neuromuscular disorders. Aims to facilitate communication between scientists and clinicians working in the field of neuromuscular disease. Runs a clinical trial network, forums and workshops. Patient organisations are member and partner organisations.

“The ENMC ensures financial support for workshops, and offers organisational support. Approximately 8 workshops on neuromuscular disorders are held each year to encourage and facilitate collaborative research”

Geographic remit: Europe. Non-pharma funding: Member and partner organisations. Membership: 9 member and partner patient organisations (Austria, Denmark, France, Germany, the Netherlands, Slovenia, Switzerland, and the UK). Full-time staff: None (7 part time). Volunteers: None.

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PUBLIC HEALTH

European Nutrition for Health Alliance, The (ENHA) http://www.european-nutrition.org Secretary General: Frank de Man

c/o International Longevity Centre 22-26 Albert Embankment London, SE1 7TJ UK

T: 0044-(0)20-7735-7565 F: 0044-(0)20-7820-9187 Email: info@european-nutrition.org / frankdeman@newyield.nl

Supports EU policymakers and national governments in designing effective policy/action plans. Partners with EU and national platforms, societies, and other healthcare stakeholders to raise awareness and help implement change. Assists in organising or cosponsoring (inter-)national events and conferences, and acts as a source of knowledge.

“The ENHA is a united effort to raise awareness of the importance and the urgency of the issue of malnutrition, and to build an agenda for action at EU and Member State levels”

Geographic remit: Europe. Non-pharma funding: Grants, and international industries involved in medical nutrition. Membership: 7 EU organisations. Full-time staff: 1.5. Volunteers: None. Country of registration: UK. Registration number: In progress.

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OLDER PEOPLE

European Older People’s Platform, The (AGE) http://www.age-platform.org Policy Officer: Isabel Borges

Rue Froissart 111 1040 Brussels Belgium

T: 0032-(0)2-280-14-70 F: 0032-(0)2-280-15-22 Email: isabel.borges@age-platform.org

Aims to voice and promote the interests of older people in the EU, and to raise awareness of the issues that concern them the most. Involved in a range of policy and information activities to put older people’s issues on the EU agenda, and promote networking among older people’s groups.

“The main underlying principle of AGE’s work is the recognition of older and retired people as a resource”

Geographic remit: Europe. Latest annual revenue: (2006) Within the range Euros 1m to 1.5m. Non-pharma funding: (2006) European Commission grant (83%), membership fees and donations (11%), other (6%). Membership: 113 full members (9 European-wide organisations and 104 national or regional-level associations), and 20 observer members at end of 2006. Full-time staff: 6. Volunteers: 7-member Executive Committee, and representatives from national organisations.

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GASTRO-INTESTINAL

European Ostomy Associations (EOA) http://www.ostomyeurope.org President: Arne Holte

c/o Deutsche ILCO Thomas-Mann-Strasse 40 53111 Bonn Germany

T: 0049-(0)-228-338-894-50 F: 0049-(0)-228-338-894-75 Email: info@ilco.de

A non-profitmaking, nonpolitical, and religiously neutral organisation concerned only with the health and welfare of ostomates. Run by ostomates, and represents their viewpoints at European level. Distributes information and exchanges experiences, supports all efforts to improve standards in ostomy care, and helps to found new national ostomy associations.

“One very important goal for the EOA is to have the International Ostomy Organisation’s Charter of Ostomates’ Rights implemented and accepted by the authorities”

Membership: 33 organisations from European countries (Austria, Belgium, Bulgaria, Croatia, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Hungary, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Poland, Portugal, Romania, Serbia and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Country of registration: Germany.

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NEUROLOGICAL CONDITIONS

European Pain Network (EPN) http://www.europeanpainnetwork.com [under construction] Secretariat: Matthew Orman

Avenue de Tervuren 402 B-1150 Brussels Belgium

T: 0032-(0)2-761-66-80 F: 0032-(0)2-777-05-04

Brings together patient organisations from around Europe to represent and support people with pain, raise awareness of their needs, and campaign to improve their lives. Calls to have pain treated as a disease in its own right, and works to eliminate the stigma surrounding long-term pain and its treatment.

“Nearly 1 in 5 of the adult population across Europe suffers from long-term pain. The EPN will make pain the priority it should be”

Geographic remit: Europe. Pharma funding: Grunenthal, and Mundipharma International. Non-pharma funding: The Medtronic Foundation. Membership: 15 patient organisations (from Belgium, Denmark, Finland, Germany, Ireland, the Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, and the UK).

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NEUROLOGICAL CONDITIONS

European Parkinson’s Disease Association (EPDA) http://www.epda.eu.com Secretary General: Lizzie Graham

4 Golding Road Sevenoaks Kent, TN13 3NJ UK

T: 0044-(0)-1732-457-683 F: 0044-(0)-1732-457-683 Email: info@epda.eu.com

A non-religious, non-political, and nonprofitmaking organisation concerned with the health and welfare of people living with Parkinson’s disease (PD), and their families and carers. Provides an important forum for partnership, encourages constructive dialogue between international patient and neurological organisations and the pharmaceutical industry, and develops research projects into quality-of-life issues. Runs conferences for multidisciplinary teams and for people of all ages with Parkinson’s. “The EPDA eases the lives of people with Parkinson's disease (and their families and carers) by promoting a constructive dialogue between science and society, and by encouraging and supporting the development of national PD organisations. We work to achieve the best possible quality of life for those with Parkinson’s, and their carers”

Geographic remit: Europe. Pharma funding: For 2008 partners and sponsors, please see: http:// www.epda.eu.com/partners. Non-pharma funding: Foundation grants, and membership fees. Membership: 39 patient associations from across Europe. Full-time staff: None (4 freelancers). Volunteers: 7 Board members. Country of registration: Belgium. Registration number: 8727/2000.

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GENERAL HEALTHCARE

European Patients Empowerment for Customised Solutions (EPECS) http://www.epecs.eu

Co-ordinator: Brigitte van der Zanden

Calavariestraat 12B 6211 NJ Maastricht The Netherlands

T: 0031-(0)6-36-062-039 Email: info@epecs.eu

A collaboration of regional patient organisations that aims to give its members (and all European patients) a powerful voice in Europe's increasingly cross-border healthcare processes. Hopes to participate in the realisation of better conditions for cross-border and European-level care. Campaigns for the free movement of patients in the EU.

“EPECS sees citizens (and not only those in border regions) as free citizens. Especially when they become patients, citizens want to act as free agents with equal rights, and do not wish to be regarded as ‘objects’ for the decisions of experts”

Geographic remit: Europe. Pharma funding: No funding from pharmaceutical companies. EPECS states that it wants to stay independent and renounce funding from pharmaceutical companies (or companies related to the pharmaceutical industry). Non-pharma funding: EPECS has applied for funds from the EU and from regional and national authorities. Membership: 7 organisations in 2 European countries (Germany and the Netherlands). As a relatively new organisation, EPECS is seeking additional members. Volunteers: 5. Full-time staff: 1. Country of registration: The Netherlands.

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GENERAL HEALTHCARE

European Patients’ Forum (EPF) http://www.eu-patient.eu Executive Director: Nicola Bedlington

3rd Floor Rue Belliard 65 1040 Brussels Belgium

T: 0041-79-303-62-56 Email: info@eu-patient.eu

The umbrella patients’ organisation at EU level. Brings together a broad range of leading European and national patients’ organisations in different disease areas. Representing over 100 million patients, the EPF is a key interlocutor with European institutions, and promotes patients’ rights, participation and involvement in EU healthcare developments. “The EPF’s vision is patient-centred, equitable, high-quality healthcare for all EU patients”

Geographic remit: EU.

Full-time staff: 5 (from January 2008).

Latest annual revenue: (2006) Euros 345,000.

Country of registration: Luxembourg.

Pharma funding: (2006) Baxter, BristolMyers Squibb, the European Federation of Pharmaceutical Industries and Associations (EFPIA), GSK, MSD, Novartis, the Pharmaceutical Research and Manufacturers of America (PhRMA), Pfizer, and UCB.

Registration number: Registered as an international non-profitmaking organisation, F 448.

Non-pharma funding: Membership fees, and project funding from the European Commission (from January 2008). Membership: 30 (includes both EU-level, umbrella, disease-specific organisations and national platforms of patients’ organisations). Representatives from all EU Member States.

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GENERAL HEALTHCARE

European Platform for Patients’ Organisations, Science and Industry (EPPOSI) http://www.epposi.org Director: Giovanni Asta

Square de Meeus-Rue de l’Industrie 4 1000 Brussels Belgium

T: 0032-(0)2-503-13-07 F: 0032-(0)2-503-31-08 Email: info@epposi.org

A patient-led partnership with industry and academic science. Exchanges information to bridge the gap between innovation and public health, and works to achieve innovative healthcare policies and raised health outcomes. Emphasises that healthcare is about people and their health and wellbeing, not just about budgets or profits.

“The EPPOSI is issue-led, and aims to provide agreed strategies on European policy matters that can be endorsed by patients, scientists, the medical community and industry”

Geographic remit: Europe. Non-pharma funding: Membership fees, and income from workshops and events. Membership: 17 patient organisations, 9 scientific bodies and 17 industry representatives (both individual healthcare companies and industry associations). Full-time staff: 2 (Director and Finance and Membership Secretariat). Volunteers: Approximately 15, providing expertise on communication, events, fundraising, and strategy.

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INFECTIOUS

European Polio Union (EPU) http://www.postpolio.eu Chairman: Johan Bijttebier

c/o The British Polio Fellowship Unit A, Eagle Office Centre The Runway, South Ruislip Middlesex, HA4 6SE UK

T: 0032-(0)3-233-34-90 F: 0032-(0)3-226-23-15 Email: heike@britishpolio.org.uk

Facilitates and improves dialogue between Europe’s medical community and polio/post-polio syndrome organisations and interest groups. Enhances communication and co-operation among these organisations.

Electron micrograph of the polio virus

“The EPU works so that people in Europe with polio and post-polio syndrome have all the resources they need to lead full, active, independent, and integrated lives, and for a world in which polio is completely eradicated”

Geographic remit: Europe. Non-pharma funding: Grants and membership dues. Membership: 12 (Belgium, the Czech Republic, Denmark, France, Germany, Ireland, Italy, the Netherlands, Spain, Switzerland, and the UK). Full-time staff: None. Volunteers: The membership. Registration number: Not available yet (formal registration procedures in process).

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PUBLIC HEALTH

European Public Health Alliance (EPHA) http://www.epha.org Secretary General: Monika Kosinska

49-51 rue de Trèves 1000 Brussels Belgium

T: 0032-(0)2-230-30-56 F: 0032-(0)2-233-38-80 Email: epha@epha.org

A network of local, national, and international non-governmental organisations and other nonprofit organisations active in the field of public health in Europe. Established in 1993.

“The EPHA’s mission is to promote and protect the health of all people living in Europe, and to advocate for greater participation of citizens in health-related policymaking at European level”

Geographic remit: Europe. Latest annual revenue: (2007) Within the range Euros 50,000 to 500,000. Non-pharma funding: (2007) The European Commission (50%), membership fees (15%), non EC-funded projects (15%), rent (15%), and others (5%). Membership: Around 100 organisations in over 20 European countries. Full-time staff: 4. Country of registration: Belgium. Registration number: BE 451133736.

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MENTAL HEALTH

European Regional Network for User-Led Projects (User-Run Network; URN) http://www.user-run-network.nl

Founders: Ursula Potjer and Christel Stevens

c/o Ggnet Postbus 2003 7230 GC Warnsveld The Netherlands

T: 0031-(0)-575-580-808, ext. 537 Email: urnetwork@ggnet.nl

A group of (ex) users of mental health services who are building a European network detailing consumer-run projects for (ex) users of mental health services. Also setting up a database of experts in each country, in which the specific expertise of (ex) users is registered. Supplies information, raises public awareness, and runs an Internet discussion group.

“We think it is ridiculous that, for example, we in the Netherlands might be trying to re-invent the wheel, while, elsewhere in Europe, the project that we are hoping to start already exists. We want to facilitate the exchange of information about European user-led projects”

Geographic remit: Europe. Membership: Projects in Austria, France, Germany, the Netherlands, Romania, and the UK. Full-time staff: None. Volunteers: 3.

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REPRODUCTIVE / SEXUAL HEALTH

European Sexual Dysfunction Alliance (ESDA) http://www.essm.org/esda/general.asp General Secretary: Milly Lemos

Avenida de Menendez Pelayo 75 Bajo derecha 3 28007 Madrid Spain

T: 0034-91-501-9513 F: 0034-91-501-9668 Email: info-esda@salud-sexual.org

An umbrella group of patient support helplines throughout Europe. Aims to assist patients suffering from sexual dysfunction, and to provide awareness and understanding of the condition to patients’ partners, the media, and other interested parties.

“The ESDA is unique in that it proactively engages with patient target audiences and the media, using a range of educational resources to raise awareness of sexual dysfunction, its management and treatments”

Geographic remit: Europe. Pharma funding: Projects have been supported by pharmaceutical companies. Membership: ESDA helplines in 9 European countries (Denmark, Finland, France, Germany, Greece, Italy, Spain, Sweden, and the UK). Full-time staff: None. Country of registration: National ESDA delegates are registered charities. Registration number: The ESDA says that it is applying for charity status. Company: Registered in the UK as a limited company since 2005, number 05596491.

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DISABILITY MENTAL HEALTH

European Society for Mental Health and Deafness (ESMHD) http://www.esmhd.org Director: Martie van Arkel

ESMHD office Markt 2 A-4192 Schenkenfelden Austria

T: 0043-7214-7027-31 F: 0043-7214-7027-29 Email: [see ESMHD website]

A non-governmental organisation that promotes the positive mental health of deaf people in Europe. Facilitates networking and the exchanges of personnel and expertise between countries. Activities include an international congress every three years.

“The ESMHD aims for mental health practice in Europe to be appropriate to deaf people's needs. We would like to see opportunities for deaf people to provide the mental health services for other deaf people”

Geographic remit: Europe. Membership: 33 member organisations and individual members in 12 European countries (Austria, Belgium, Denmark, Finland, France, Germany, Ireland, the Netherlands, Norway, Spain, Sweden, and the UK). Country of registration: The Netherlands.

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GENETIC / RARE DISEASES

European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) http://www.espku.org President: Jean-Marie Criem

Email: info@espku.org

An umbrella organisation of representatives of people with PKU who have come together to improve the quality of life of those afflicted with PKU. Promotes the educational and social welfare of people with PKU or allied disorders, and stimulates scientific and medical research in PKU. Disseminates information, organises meetings, and helps in the establishment of national PKU societies.

“The continuing aim of the E.S.PKU must be to ensure the best-possible treatment and quality of life for all people afflicted, irrespective of age or location. The E.S.PKU looks forward to receiving support in reaching for these goals”

Geographic remit: Europe. Membership: About 23 national and regional associations from 24 European countries. Full-time staff: 6.

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DISABILITY

European Union of the Deaf (EUD) http://www.eudnet.org Executive Director: Mark Wheatley

Galerie de la Toison D’Or 29 Chaussee d’Ixelles B-1050 Brussels Belgium

T: 0032-(0)2-289-70-36 F: 0032-(0)2-289-70-37 Email: mark.wheatley@eudnet.org

Established in 1985. The only organisation representing the interests of deaf people at EU level. Aims to promote, advance, and protect the rights of, and opportunities for, deaf people in the EU.

“The EUD has consistently implemented the belief that training and education are a successful route to self-advocacy for deaf citizens”

Geographic remit: Europe.

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REPRODUCTIVE / SEXUAL HEALTH YOUTH

European Youth Network on Sexual and Reproductive Rights (YouAct) http://www.youact.org

Coordinator: Marije Nederveen

c/o World Population Foundation Vinkenburgstraat 2A 3512 AB Utrecht The Netherlands

T: 0031-(0)-30-239-38-88 F: 0031-(0)-30-239-38-60 Email: info@youact.org

A European youth network working on behalf of the sexual and reproductive rights of young people. Uses advocacy, training, and awareness raising to ensure that young people have the right to healthcare, the right to choose their own partner, to have access to condoms when needed, and are able to choose how many children they want.

“Young people have the highest risk of contracting HIV/AIDS, and for girls aged 15-19, pregnancy is the first cause of death. YouAct therefore aims at the realisation of sexual and reproductive rights for all young people”

Geographic remit: Europe (and worldwide). Non-pharma funding: (2006) The ALERT fund, CHOICE for youth and sexuality, Cooperating Netherlands Foundations for Central and Eastern Europe, the Council for Europe, Dutch AIDS fund, Oxfam Novib, the Summit Foundation, and its parent body, the World Population Foundation. Membership: 25 members in 20 European countries. Full-time staff: 1.

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MENTAL HEALTH

Euro-Psy-Rehabilitation http://www.europsy.be General Secretary: Marc Garcet

84 Rue Saint-Lambert B-4040 Herstal Belgium

T: 0032-(0)4-228-89-81 F: 0032-(0)4-227-73-65 Email: europsy@europsy.be

Develops inter-institutional European exchange in the field of social, professional, and economic rehabilitation of people with a mental or psychiatric disorder. Promotes European programmes, and organises study visits and European seminars.

“Readaptation and reintegration must lead the individual away from the status of patient, dependent on the healthcare structure, to the status of consumer, negotiator, active agent, and worker—a citizen who exercises his rights.”

Geographic remit: Europe. Non-pharma funding: The European Commission, and membership fees. Membership: Member groups and individuals in 13 European countries (Austria, Belgium, Finland, France, Germany, Greece, Luxembourg, the Netherlands, Norway, Portugal, Romania, Spain, and the UK). Country of registration: Belgium.

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GENETIC / RARE DISEASES

Eurordis (European Organisation for Rare Diseases) http://www.eurordis.org Chief Executive Officer: Yann le Cam

c/o Plateforme Maladies Rares 102 rue Didot 75014 Paris France

T: 0033-1-56-53-52-10 F: 0033-1-56-53-52-15 Email: eurordis@eurordis.org

Dedicated to improving the quality of life of all Europeans living with rare diseases. Aims to build a strong pan-European community of rare-disease patient organisations and people living with rare diseases, and works to act as their voice at European level.

“We should never take for granted that people know what rare diseases are”

Geographic remit: Europe. Latest annual revenue: (2006) Within the range Euros 1m to 1.5m. Pharma funding: (2006) 21% of revenue donated by 25 pharmaceutical companies. Non-pharma funding: The European Commission (13%), the French Muscular Dystrophy Association, AFM (39%), and membership fees (2%). Membership: Represents more than 300 rare disease organisations in 34 countries (including 23 EU Member States), and covers more than 1,000 rare diseases. Full-time staff: 20 (equivalent to 13 fulltime staff). Volunteers: 12-member Board of Directors, and at least 55 volunteer translators. Country of registration: France.

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GENETIC / RARE DISEASES

Fabry International Network (FIN) http://www.fabryintnetwork.com President: Rune Sedal

Soere Titlestad 111 5243 Fana Bergen Norway

T: 0047-55-99-00-46 F: 00780-443-4959 Email: rune@fabry.no

An organisation and network that collaborates with individual national Fabry patient organisations to improve the lives of Fabry patients (and their families and care givers). Educates the public about Fabry disease, promotes best practises for diagnosing and treating Fabry patients, and helps establish national Fabry patient organisations. Provides an independent forum for all Fabry patient organisations. “The FIN facilitates contact between Fabry patient organisations to support people affected by Fabry disease. It is neutral and independent in its communication, actions, and meetings, and does not compete with any other Fabry organisation”

Geographic remit: Europe (and other parts of the world). Latest annual revenue: (2007) Euros 50,000. Pharma funding: Actelion Pharmaceuticals Canada Inc, Amicus Therapeutics, and Genzyme. Non-pharma funding: Donations from the Interaction Institute for Social Change, and from Sanders and Clients Consulting. Membership: 18. Full-time staff: None. Volunteers: 5. Country of registration: The Netherlands. Registration number: 22082/2005L21941.

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GENETIC / RARE DISEASES

Federation of European Williams Syndrome associations (FEWS) http://www.euwilliams.org Chairperson: Suzy Cooper Morgan

c/o Tervuursesteenweg 30 B-3001 Heverlee Belgium

T: 0044-(0)1483-548-900 Email: paul.pyck@skynet.be

Formed in 1999 by organisations around Europe that share the aim of improving the lives of people suffering from Williams syndrome (a rare disorder caused by an abnormality in chromosomes).

“We are determined to improve the lives of all those who suffer from this rare syndrome”

Geographic remit: Europe. Latest annual revenue: Less than Euros 50,000. Non-pharma funding: Membership fees. Membership: Organisations in 12 European countries (Belgium, France, Germany, Hungary, Ireland, Italy, Norway, Romania, Slovakia, Spain, Sweden and the UK). Full-time staff: None. Volunteers: 12 Registration number: None.

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MENTAL HEALTH

GAMIAN-Europe (Global Alliance of Mental Illness Advocacy NetworksEurope) http://www.gamian.eu Secretary General: Paul Arteel

Rue Washington 40 1050 Brussels Belgium

T: 0032-(0)475-73-89-28 Email: gamian-europe@clicknet.ro

Promotes information, education and awareness by organising a yearly European Convention, regional seminars, and a newsletter. Supports and engages in research projects pertaining to mental illness, and helps in the dissemination of results. Assists member organisations, and develops training for members.

“GAMIAN-Europe aims to involve users (patients and family members and their organisations) in mental health policy on a local, regional, national, and European level”

Geographic remit: Europe. Latest annual revenue: (2007) Euros 100,000. Pharma funding: Astra Zeneca, Eli Lilly, GSK, Lundbeck, and Pfizer. Non-pharma funding: Membership fees. Membership: Over 100 from all European countries. Full-time staff: None. Volunteers: None. Country of registration: Belgium.

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REPRODUCTIVE / SEXUAL HEALTH WOMEN

Global Campaign for Microbicides (GCM) http://www.global-campaign.org European Coordinator: Rebekah Webb

3rd floor 98 rue du Trone 1050 Brussels Belgium

T: 0032-(0)2-507-12-29 F: 0032-(0)2-507-12-22 Email: info@global-campaign.org

A broad-based, international effort to build support among policymakers, opinion leaders, and the general public for increased investment into microbicides and other usercontrolled prevention methods. Through advocacy, policy analysis, and social science research, the Campaign's network of over 300 NGOs works to accelerate product development, facilitate widespread access and use, and protect the needs and interests of users (especially women). “The Campaign raises awareness and mobilises political support for increased funding for microbicide research, female condom and cervical barrier methods. It creates a supportive policy environment for the timely development, introduction and use of new prevention technologies”

Geographic remit: Europe (and worldwide). Latest annual revenue: (2006) US$1.5 million [Euros 1 million]. Non-pharma funding: Government support, individuals, and private foundations. Membership: Over 300 NGO endorsers (including representatives from all EU Member States). Full-time staff: 2 in Europe (plus 15 in the rest of the world). Country of registration: Belgium.

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CANCER

Global Lung Cancer Coalition (GLCC) http://www.lungcancercoalition.org Secretary/Secretariat: Jesme Fox

c/o The Roy Castle Lung Cancer Coalition Rothesay House, 134 Douglas Street Glasgow, G2 4HF Scotland

T: 0044-(0)-141-331-0580 F: 0044-(0)-141-331-0590 Email: glcc@roycastle.liv.ac.uk

Promotes global understanding of lung cancer, and raises lung cancer awareness. Provides a forum for members to network, share ideas, and to learn from each others’ initiatives.

“The GLCC is committed to increasing awareness and destigmatising the disease amongst patients, the medical community, policymakers, the general public, and the media, by delivering highest-quality information and programmes through its member groups”

Geographic remit: Europe (and worldwide). Membership: 22 (European members in Denmark, France, Germany, Ireland, Italy, the Netherlands, Spain, Sweden, and the UK).

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE

Health Action International–Europe (HAI-Europe) http://www.haiweb.org

Jacob van Lennepkade 334-T 1053 NJ Amsterdam The Netherlands

T: 0031-(0)20-683-3684 F: 0031-(0)20-685-5002 Email: info@haiweb.info

A research and advocacy organisation that specialises in the concept of essential medicines and in the rational employment of medicines. Campaigns on behalf of greater access to essential medicines.

“HAI is working towards a word where all people, especially the poor and disadvantaged, are able to exercise their human right to health”

Geographic remit: Europe. Latest annual revenue: (2006) Euros 1.1m. Pharma funding: Does not accept funding from commercial bodies. Non-pharma funding: (2006) Various national or international grant giving bodies, such as the Danish International Development Agency (Danida), the Rockefeller Foundation, the Swedish International Development Cooperation Agency (SIDA), and the World Health Organization (WHO).

Finland, Germany, Greece, Latvia, the Netherlands, Poland, Spain, Sweden, Switzerland, and the UK). Full-time staff: 5. Country of registration: The Netherlands.

Membership: 32 member organisations (European members from Belgium, France,

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PUBLIC HEALTH

Health and Environment Alliance (HEAL) http://www.env-health.org Executive Director: Génon Jensen

Boulevard Charlemagne, 28 B-1000 Brussels Belgium

T: 0032-(0)2-234-36-40 F: 0032-(0)2-234-36-49 Email: info@env-health.org

A network of citizens’, patients’, women’s, health professionals’ and environmental organisations from across Europe. Raises awareness of how environmental protection improves health. Creates opportunities for better representation of citizens’ and health experts’ perspectives in the environment and in healthrelated European policymaking.

“The HEAL’s mission is to improve the health and well-being of European people by protecting the environment in which they live. The HEAL advocates for public policies that promote a cleaner and safer environment by bringing more health expertise to the EU environmental policymaking process”

Geographic remit: Europe. Latest annual revenue: (2006) Euros 529,000. Non-pharma funding: The European Commission, the Marisla Foundation, members’ contributions, and the Sigrid Rausing Trust. Membership: 55 European, international, or national members (European members from Belgium, Bulgaria, Croatia, the Czech Republic, France, Germany, Hungary, Ireland, Italy, Luxembourg, Macedonia, the Netherlands, Romania, Serbia, Sweden, and the UK). Full-time staff: 8.

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GENERAL HEALTHCARE

Health Care Without Harm Europe (HCWH Europe) http://www.noharm.org/europe Executive Director: Dr. Čestmir Hrdinka

Rumunska 12 120 00 Prague 2 Czech Republic

T: 00420-222-515-494 F: 00420-222-515-057 Email: europe@hcwh.org

The European element of a global coalition working to transform the healthcare industry so that, without compromising patient safety or care, it is ecologically sustainable and offers no harm to people or the environment. Aims to ensure that patients, healthcare workers, and communities can access information about chemicals used in healthcare, and can participate in decisions about chemical exposures. Maintains an online library on environmentally responsible healthcare. “We are an international coalition of hospitals and healthcare systems, medical professionals, community groups, health-affected constituencies, labour unions, environmental and environmental health organisations, and religious groups”

Geographic remit: Europe. Latest annual revenue: (2006) CZK 13m [Euros 500,000]. Non-pharma funding: The European Commission, and four non-profit organisations. Membership: Over 60 members in 23 European countries. Full-time staff: 6. Country of registration: The Netherlands and the Czech Republic.

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GENERAL HEALTHCARE

Health First Europe (HFE) http://www.healthfirsteurope.org Contact person: Maya Parikh

Chaussee de Wavre 214 D 1050 Brussels Belgium

T: 0032-(0)2-626-19-99 F: 0032-(0)2-626-95-01 Email: info@healthfirsteurope.org

An awareness-raising platform for patient groups, healthcare workers, academics, experts and industry. Established in 2004.

“We aim to ensure that equitable access to modern, innovative, and reliable medical technology and healthcare is regarded as a vital investment in the future of Europe. We call for truly patient-centred healthcare, and believe that every European citizen should benefit from the best medical treatments available”

Geographic remit: Europe. Membership: 20 pan-European healthcare-focused associations, and 10 individual members. Full-time staff: 4. Country of registration: Belgium.

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DISABILITY

Hear-it AISBL (Hear-it) http://www.hear-it.org General Secretary: Kim Ruberg

Avenue Tervuren 35 B-1040 Brussels Belgium

T: 0032-(0)477-53-25-89 Email: hear-it@hear-it.org

An international non-profit and non-commercial organisation that disseminates information about hearing impairments and their human and socio-economic consequences. Cooperates with national organisations, dialogues with public authorities and others on hearing impairment issues, and publishes http://www.hear-it.org, the world’s largest website on hearing and hearing loss.

“Hear-it AISBL deals with almost any issue related to hearing impairment, including prevention of hearing loss, the consequences of hearing impairment for the individual and for society, advice and practical information for hearing-impaired people, and information and advice for relatives and colleagues”

Geographic remit: Europe. Membership: The AEA (Association Européenne des Audioprothésistes), the IFHOH (International Federation of the Hard Of Hearing), and individual members from the hearing aid industry, dispensers of hearing aids, and others who share the objectives of Hear-it AISBL.

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HEART DISEASE / CIRCULATORY

HEART EU http://www.hearteu.org Senior member of staff: Michael Livingstone

Boslaan 39 2132 RJ Hoofddorp The Netherlands

T: 0031-23-567-9933 Email: info@hearteu.org

A European patient network formed by four national cholesterol organisations. Aims to see an end to premature and unnecessary heart disease.

“The HEART EU network helps in the prevention and risk management of inherited cardiovascular disease, particularly where inherited high cholesterol is concerned”

Geographic remit: Europe. Non-pharma funding: (2007) Healthy People [a Netherlands juice drink company]. Membership: 4 member organisations (the Netherlands, Norway, Spain, and the UK).

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OLDER PEOPLE

HelpAge International http://www.helpage.org Chief Executive Officer: Richard Blewitt

1st Floor, York House 207-221 Pentonville Road London, N1 9UZ UK

T: 0044-(0)20-7278-7778 F: 0044-(0)20-7713-7993 Email: hai@helpage.org

A network of NGOs striving for the rights of disadvantaged older people to economic and physical security; healthcare and social services; and support in their caregiving role. Ensures that the voices of older people are heard by helping older people participate in the research, programmes, and advocacy that benefit them.

“HelpAge International has a vision of a world in which all older people fulfil their potential to lead dignified, healthy and secure lives.” Geographic remit: Although mainly global, does conduct programmes for Eastern Europe.

Country of registration: England and Wales.

Latest annual revenue: (2006-2007) £14.7m [Euros 19.7m].

Company: Private, limited by guarantee, no share capital, number 1762840.

Non-pharma funding: (2006-2007) Comic Relief, DFID UK, the Disasters Emergency Committee, the European Commission, and Help the Aged.

Registration number: 289180.

Membership: 10 affiliate organisations in 7 European countries (the Czech Republic, Denmark, Lithuania, Malta, the Netherlands, Slovenia, and the UK). Full-time staff: 88.

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ENDOCRINE

Hypoparathyroidism Europe (HPTH Europe) http://www.hypoparathyroidism.net [under construction] President: Gudrun Ruth Vidarsdottir

Holtsgata 33 101 Reykjavik Iceland

T: 00354-663-0638 Email: gudrunruth@internet.is

Aims to build a strong panEuropean community of patient organisations for people living with hypoparathyroidism (HPTH). Intends to be this community's voice at the European level, and, directly or indirectly, to fight against the impact of HPTH by improving access to information, to services, to diagnosis, to good treatment and care, and by promoting research and the exchange of good practices.

“HPTH Europe was established in June 2007 to get better treatments and orphan drugs for all patients in Europe suffering from HPTH, and to get the PTH hormone approved for these patients, and available to everyone who needs it”

Geographic remit: Europe. Non-pharma funding: No sources of funding yet. Membership: Approximately 250 individual members in 6 European countries (Denmark, Finland, Iceland, Norway, Sweden, and the UK). Country of registration: Iceland. Registration number: 610607-3140.

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GENERAL HEALTHCARE

Iatrogenic Europe Unite (IEU-Alliance) http://www.ieu-alliance.org Co-ordinator: Eamon Duffy

c/o the Action on Medical Negligence Association 27 Woodford Drive Armagh Northern Ireland

T: 0044-(0)-2837-527-307 Email: amnarayni@hotmail.com

A voluntary association of European patient support groups formed in November 2004 in Germany to discuss the common problems facing victims of serious medical errors. Drew up an IEUAlliance Declaration to promote patient safety by ensuring statutory enactment of patients’ rights. Delivered the Declaration to the UK Department of Health, the WHO (PFPS-Alliance) in November 2005, and to the European Council and Parliament in March 2006, followed by a demonstration in Aachen in April 2007. “Urgent dialogue is required with damaged patients, their support groups, and with health professionals and politicians on the unnecessary problems facing the iatrogenic patient, the most immediate being arranging genuine specialist remedial care. The present culture of ‘denial and cover-up’ should be changed to ‘full, open, and honest disclosure, regardless of legal liability’ when health professionals are able to be truthful with their damaged patients. Medical errors are inevitable, and a more humane approach is required”

Copyright Reg.No.261404

Geographic remit: Europe (and international). Latest annual revenue: No revenue at present. Membership: 7 national groups (Germany, Ireland, the Netherlands, and the UK). Full-time staff: None. Volunteers: 2 (co-ordinator and webmaster). Registration number: Not registered as a charity.

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LEARNING DISABILITY

Inclusion Europe http://www.inclusion-europe.org Director: Geert Freyhoff

Chaussee d’Ixelles 29, bte 393/32 Galeries de la Toison D’Or B-1050 Brussels Belgium

T: 0032-(0)2-502-28-15 F: 0032-(0)2-502-80-10 Email: secretariat@inclusioneurope.org

Committed to advancing the human rights and defending the interests of people with intellectual disability (and their families). Represents the members of Inclusion International in Europe.

“Over the past years, Inclusion Europe has built a track record of a number of very successful projects supported by different donors. They help us to bring Europe closer to its citizens with intellectual disabilities and their families”

Geographic remit: Europe. Non-pharma funding: Receives EU funding. Membership: 57 members and networks in 36 countries. Full-time staff: 5. Volunteers: 2.

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DISABILITY OLDER PEOPLE

Information Society Open to ImpairmentS (e-ISOTIS) http://www.e-isotis.org Chair: Zoe Apostolopoulou

40 Klitaimnistras Athens 131 22 Greece

T: 0030-210-2693760 F: 0030-210-2693775 Email: info@e-isotis.org

Founded in 2004, e-ISOTIS works with people with a disability and with older people (and their families), as well as with individuals and companies in information communication technology (ICT) and the training/research community. It aims to ensure that older people and people with a disability have access to, and training in, ICT.

“We believe that all citizens have the right to use the benefits offered by the new opportunities of the Information Society”

Geographic remit: Europe (and some non-European countries). Latest annual revenue: Euros 180,000. Non-pharma funding: Receives EU funding. Membership: 15 member associations. Full-time staff: 12. Volunteers: More than 40. Country of registration: Greece. Registration number: 209/2004.

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HIV / AIDS

International AIDS Vaccine Initiative-Europe (IAVI) http://www.iavi.org/viewpage.cfm?aid=1687 Operations Director, Europe: Jeroen van der Meer

European Office Herengracht 208 1016 BS Amsterdam The Netherlands

T: 0031-20-521-0030 F: 0031-20-521-0039 Email: info@iavi.org

The European arm of a global non-profit organisation with a mission to ensure the development of safe, effective, accessible, preventive HIV vaccines. IAVI reaches out to parliamentarians, policymakers, governments, civil societies, think tanks, industry, scientists, and media in the EU to ensure that AIDS vaccines are placed and remain high on the political agenda.

“Key IAVI achievements include securing funding from seven European governments and the EU, establishing an advocacy voice across Europe through a network of civil society organisations, and conducting earlyphase clinical trials of HIV vaccine candidates in four European countries”

Geographic remit: Europe (and global). Pharma funding: Bristol-Myers Squibb, Crucell, GSK, Merck and Co, and Pfizer Inc. Non-pharma funding: Huge range of donor bodies, including governments, foundations and individuals. Membership: 8 partner patient group organisations in 8 European countries (Denmark, Finland, France, Germany, the Netherlands, Spain, Sweden, and the UK). Full-time staff: 15 in the European office.

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GENERAL HEALTHCARE

International Alliance of Patients’ Organizations (IAPO) http://www.patientsorganizations.org Chief Executive Officer: Jo Harkness

703 The Chandlery 50 Westminster Bridge Road London, SE1 7QY UK

T: 0044-(0)20-7721-7508 F: 0044-(0)20-7721-7596 Email: info@patientsorganizations.org

Brings a patient voice to international healthcare debates, and provides training and support to build the capacity of patients’ organizations around the world. Has European members, and is involved in European healthcare issues.

“IAPO’s vision of patients around the world being at the centre of healthcare works by realising active partnerships with patients’ organisations, maximising their impact through capacity building. IAPO advocates internationally on healthcare policy with the aim of influencing international, regional, and national health agendas and policies, and it builds cross-sector alliances”

Geographic remit: Global (including Europe). Latest annual revenue: (2006) US$636,000 [Euros 436,000]. Pharma funding: Please see listing at http://www.patientsorganizations.org/ partners. Non-pharma funding: Membership fees, publication sales, and sponsorship of the Global Patients Congress. Membership: 200, from over 40 countries worldwide. Full-time staff: 3. Volunteers: 1. Country of registration: The Netherlands. Registration number: 24001729.

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AUTO-IMMUNE / IMMUNE DISEASES

International Association for Autoimmune Disease (APAI) http://www.assoc-apai.org President: Dr Christina Gammon

Via Degli Uliveti, 8 64029 Silvi Marina (TE) Italy

T: 0039-085-935-3560 F: 0039-085-935-3560 Email: apai@assoc-apai.org

Organises informative meetings, congresses, and events for patients with an autoimmune disease (and for their doctors). Finances research and offers grants. Publishes Apai News to alert patients to the latest scientific developments in autoimmunology, and maintains links with various EU and national government organisations.

“The APAI improves the quality of life of patients and their relatives by teaching self management”

Geographic remit: Europe (and international). Latest annual revenue: (2007) Euros 85,000. Pharma funding: Occasional funding from pharma. Non-pharma funding: Fundraising events (such as congresses and gala dinners). Membership: 11 (European members in Austria, Italy, and the UK). Full-time staff: 7. Volunteers: 82.

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CANCER

International Brain Tumour Alliance (IBTA) http://www.theibta.org Secretary: Kathy Oliver

PO Box 244 Tadworth Surrey, KT20 5WQ UK

T: 0044-(0)-1737-813-872 F: 0044-(0)-1737-812-712 Email: chair@theibta.org / kathy@theibta.org

Raises awareness about the challenges of brain tumours, and advocates for equal access to therapies. Supports moves towards greater international collaboration between brain tumour patient and caregiver groups, clinicians, commercial organisations, researchers, and allied healthcare professionals with an interest in this disease area.

“Greater collaboration, greater knowledge, greater hope” Geographic remit: Europe (and international). Latest annual revenue: Under US$50,000 [Euros 33,500]. Pharma funding: Part-funded by pharmaceutical companies [for a list of funding companies, see http:// www.theibta.org/index.php? page=sponsorship-policy].

Full-time staff: None. Volunteers: Variable, as required for individual projects. Company: Not-for-profit limited liability company registered in England and Wales, number 6031485.

Non-pharma funding: Charitable organisations and individuals with an interest in improving the situation for brain tumour patients. Membership: No formal membership structure. Main projects supported by relevant patient/caregiver support groups, professional societies, commercial and other organisations from many countries.

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NEUROLOGICAL CONDITIONS

International Bureau for Epilepsy-Europe (IBE) http://www.ibe-epilepsy.org Vice President Europe: Thanos Covanis

International headquarters, IBE 11 Priory Hall, Stillorgan Dublin 18 Ireland

T: 00353-1-210-88-50 F: 00353-1-210-84-50 Email: graaepil@otenet.gr

The European region of an international organisation for national epilepsy organisations. Supports the development of new and existing members, exchanges information, and sets standards that provide an international policy focus and an identity for all people with epilepsy.

“The IBE is partnering in EPICURE, an exciting, 4-year research project funded by the Sixth Framework Programme, investigating the frequency of epilepsies in children. The IBE will disseminate information, and promote the project in Europe”

Geographic remit: Europe. Latest annual revenue: (2006) US$1.2m [Euros 826,000]. Non-pharma funding: (2006) Donations from commerce and industry, grants, international congresses, and membership fees. Membership: 45 member organisations (mainly patient groups) in 28 European countries (Austria, Belgium, Bulgaria, Croatia, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Ireland, Italy, Lithuania, Malta, the Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK).

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DIABETES

International Diabetes Federation-European Region (IDF-Europe) http://www.idf-europe.org

Regional Office Manager: Lex Herrebrugh

Avenue Emile De Mot 19 B-1000 Brussels Belgium

T: 0032-(0)2-537-18-89 F: 0032-(0)2-537-19-81 Email: info@idf-europe.org

One of seven regional groupings in the International Diabetes Federation, the only global advocate for people with diabetes and their healthcare providers.

“Diabetes is emerging fast as one of the biggest health catastrophes the world has ever seen. The diabetes epidemic will overwhelm healthcare resources everywhere if governments do not wake up and take action now”

Geographic remit: Europe (and global). Pharma funding: AstraZeneca, Bayer, Bioton, Eli Lilly, GSK, Merck Sharp & Dohme, Novartis, Novo Nordisk, Pfizer, Sanofi-Aventis, and Servier. Non-pharma funding: Member associations and corporate partners, including LifeScan, Medtronic, and Roche Diagnostics. Membership: Around 66 member associations from across Europe. Full-time staff: 2 in the European office, 1 stationed in Bucharest.

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DIABETES

International Osteoporosis Foundation (IOF) http://www.iofbonehealth.org Chief Executive Officer: Daniel Navid

9, rue Juste-Olivier CH-1260 Nyon Switzerland

T: 0041-22-994-01-00 F: 0041-22-994-01-01 Email: info@iofbonehealth.org

A global alliance of patient, medical, and research societies, scientists, healthcare professionals, and corporate partners across many fields. The IOF headquarters are in Nyon, Switzerland, with a second secretariat, IOF France, in Lyon. Founded in 1998 following a merger of the European Foundation for Osteoporosis and the International Federation of Societies for Skeletal Diseases.

“The IOF vision is a world without osteoporotic fractures. The IOF increases awareness and understanding of osteoporosis, motivates people to take action to prevent, diagnose, and treat osteoporosis, and supports national osteoporosis societies”

Geographic remit: Europe (and worldwide). Pharma funding: See: http:// www.iofbonehealth.org/about-iof/theorganization/fundraising/corporatepartnerships.html Non-pharma funding: Congress and membership fees, sponsorship, and training courses. Membership: 182 members in 88 locations. Full-time staff: 12. Volunteers: None. Country of registration: Switzerland. Registration number: Registered as a not-for-profit, international, nongovernmental foundation.

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AUTO-IMMUNE / IMMUNE DISEASES

International Patient Organisation for Primary Immunodeficiencies (IPOPI) http://www.ipopi.org

Executive Director: David Watters

Firside, Main Road Downderry Cornwall, PL11 3LE UK

T: 0044-(0)-1503-250-668 Email: david@ipopi.org

Aims to improve the quality of life of people with a primary immunodeficiency—a set of more than 100 genetic disorders that make individuals susceptible to infections.

“The way ahead is paved with opportunities for closer co-operation between the various stakeholders involved with primary immunodeficiencies” Geographic remit: Global. Latest annual revenue: Within the range Euros 50,000 to 500,000. Pharma funding: Baxter, and CLS Behring.

Volunteers: Includes a 10-person Executive Committee. Country of registration: England and Wales. Registration number: 1058005.

Non-pharma funding: The Immune Deficiency Foundation, and the Jeffrey Modell Foundation. Membership: Organisations in 17 European countries (Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, the Netherlands, Norway, Poland, Serbia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Executive director part-time.

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REPRODUCTIVE / SEXUAL HEALTH

International Planned Parenthood Federation European Network (IPPF EN) http://www.ippfen.org

Regional Director: Vicky Claeys

Rue Royale 146 1000 Brussels Belgium

T: 0032-(0)2-250-09-50 F: 0032-(0)2-250-09-67 Email: info@ippfen.org

One of the six regions of the IPPF, a worldwide movement of national organisations working with and for communities and individuals. Aims to safeguard sexual and reproductive health and rights.

“The IPPF EN works towards a world in which women, men, and young people are free to choose parenthood or not, free to decide how many children they will have and when, and free to pursue healthy sexual lives without fear of unwanted pregnancies or sexually-transmitted infections (including HIV)”

Geographic remit: Europe. Latest annual revenue: (2006) US$5.9 million [Euros 3.9 million]. Membership: Associations in 41 European countries (and elsewhere). Full-time staff: About 20. Country of registration: Belgium and the UK. Registration number: 470439013 (Belgium); 229476 (the UK).

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PUBLIC HEALTH

International Union for Health Promotion and Education/European Region (IUHPE/EURO) http://www.iuhpe.org

Vice President for European Region: Mika Pyykkö

42 Blvd. de la Libération 93203 St. Denis Cedex France

T: 0033-1-48-13-71-20 F: 0033-1-48-09-17-67 Email: iuhpe@iuhpe.org

The European regional office of the International Union for Health Promotion and Education. Committed to improving health and wellbeing through education, community action, and the development of healthy public policy. Works to strengthen understanding and expertise related to health promotion, and lobbies policy and decision-makers accordingly.

“We strive to promote health, and to contribute to the achievement of equity in health between and within countries in Europe”

Geographic remit: Europe. Latest annual revenue: (2007) Euros 35,000. Pharma funding: None. Non-pharma funding: The parent body (the IUHPE), and membership fees. Membership: 430 trustee, institutional, and individual members in 35 European countries. Full-time staff: None for the European region of IUHPE. Volunteers: None. Country of registration: France.

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CANCER

Leukämie-Online e.V. http://www.leukaemie-online.de President: Jan Geissler

Am Rothenanger 1b 85521 Riemerling Germany

T: 0049-89-6283-6807 F: 0049-89-6283-6808 Email: info@leukaemie-online.de

One of the largest online communities for Germanspeaking patients with leukemia. Provides news and knowledge about progress in research and leukemia therapy, as well as a lively discussion forum. Every member of the community can ask questions, submit articles, and suggest books and web links.

“Leukämie-Online was set up, and is run, solely by patients and their relatives”

Geographic remit: German-speaking parts of Europe. Latest annual revenue: (2007) Euros 17,000. Pharma funding: Bristol-Myers Squibb, and Novartis. Non-pharma funding: Donations from the public. Membership: Over 1,100 (from Austria, Germany, and Switzerland). Full-time staff: None. Volunteers: 8. Country of registration: Germany. Registration number: Vereinsregister München, VR19201.

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CANCER

Lymphoma Coalition http://www.lymphomacoalition.org Secretariat: Trish Carter

PO Box 386 Aylesbury Buckinghamshire, HP20 2GA UK

Email: info@lymphomacoalition.org

A non-profit network organisation of lymphoma patient groups. Provides support and information to people touched by lymphatic cancer. Builds partnerships among Coalition members, and shares experience and expertise in lymphoma care and treatment.

“The Coalition is a global initiative dedicated to raising awareness of lymphoma (a common form of cancer)”

Geographic remit: Europe (and the rest of the world). Pharma funding: Eli Lilly, Janssen-Cilag, and Roche. Membership: 35 members in 30 countries, including 17 European countries (Bulgaria, Croatia, the Czech Republic, France, Germany, Italy, Latvia, Lithuania, the Netherlands, Poland, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Volunteers: 35. Country of registration: Due to be registered in Belgium.

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MENTAL HEALTH

Mental Disability Advocacy Center (MDAC) http://www.mdac.info Executive Director: Oliver Lewis

H-1088 Budapest Rakoczi ut 27/B Hungary

T: 0036-1-413-2730 F: 0036-1-413-2739 Email: mdac@mdac.info

Advances the human rights of children and adults with actual or perceived intellectual or psychosocial (mental health) disabilities. Focusing on Europe and central Asia, the MDAC uses a combination of law and advocacy to promote equality and social integration. MDAC’s priority human rights areas are legal capacity and guardianship, inhuman and degrading treatment and punishment, the right to live in the community, and inspections of places of detention. “The MDAC’s vision is for a world in which people respect each other’s autonomy and dignity, and where emotional, mental, and learning differences are valued”

Geographic remit: Europe (and Central Asia). Latest annual revenue: (2006) Euros 674,000. Pharma funding: None. Non-pharma funding: (2006) The European Commission, the Open Society Institute, the Sigrid Rausing Trust, and private foundations and individual donors. Membership: No member organisations. Full-time staff: 10. Volunteers: 6. Country of registration: Hungary. Registration number: 8689.

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MENTAL HEALTH

Mental Health Europe – Santé Mentale Europe (MHE-SME) http://www.mhe-sme.org Director: Mary Van Dievel

Boulevard Clovis 7 B-1000 Brussels Belgium

T: 0032-(0)2-280-04-68 F: 0032-(0)2-280-16-04 Email: info@mhe-sme.org

A non-governmental organisation committed to the promotion of positive mental health, the prevention of mental distress, the improvement of care, advocacy, and the protection of the human rights of users and ex-users of mental health services (and their families and carers).

“MHE believes that much more can be done in the promotion of mental health and well-being, and in the prevention of mental disorders, if we address civil society, those suffering from mental illness, and their carers and families”

Geographic remit: Europe. Non-pharma funding: (2006) EU subsidies, and membership fees. Membership: Around 70 member organisations in 28 European countries, plus over 50 individual members. Full-time staff: 4. Volunteers: 4. Country of registration: Belgium. Registration number: 453.838 056.

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CANCER

Myeloma Euronet (ME) http://www.myeloma-euronet.org Board Member and Secretary: Robert Schäfer

Rue de Dampremy 67/32 B-6000 Charleroi Belgium

T: 0049-(0)30-28-87-97-55 F: 0049-(0)30-28-87-97-66 Email: info@myeloma-euronet.org

A registered, international, notfor-profit organisation dedicated to raising public awareness of multiple myeloma—an increasingly common form of bone marrow cancer. Provides information on diagnosis, treatment, and care, as well as support and advocacy for myeloma patients (and for their families and loved ones).

“We know the cost of treatment is not low, but every patient deserves the bestavailable treatment for her or his stage of disease. National health agencies must adopt myeloma treatments as they become available, and cost should not be a determining factor when making treatment decisions”

Geographic remit: Europe. Latest annual revenue: (2007) Within the range Euros 50,000 to 500,000. Pharma funding: (2007) Amgen Inc, Celgene International Sàrl, Novartis Pharma AG, Pharmion Ltd, Ortho Biotech–a division of Janssen-Cilag (the founding sponsor), and Roche. Non-pharma funding: (2007) The Steel Charitable Trust. Has developed a funding policy based on those of the European Cancer Patient Coalition, Eurordis, and the UK’s Long-Term Medical Conditions Alliance.

Membership: Patient groups and member organisations in 15 European countries (Austria, Croatia, the Czech Republic, France, Germany, Latvia, Poland, Portugal, Romania, Serbia, Slovakia, Spain, Sweden, Switzerland, and the UK). Full-time staff: None. Volunteers: 6. Country of registration: Belgium. Registration number: 883.729.287.

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MENTAL HEALTH

National Suicide Bereavement Support Network (NSBSN) http://www.nsbsn.org/europeandirectory.htm Chairperson: Theresa Millea

P.O. Box 1 Youghal County Cork Ireland

T: 00353-(0)24-95-561 F: 00353-(0)87-987-7619 Email: info@nsbsn.org

A network of the facilities available in many European countries that specialise in helping people who have been bereaved by suicide. Provides information and contact details about the support groups in each country, including whether the groups offer services for free and whether their membership is open or closed.

“An increase in the number of support groups is a very positive development, showing to some degree that the awful stigma previously associated with suicide is beginning to lift”

Geographic remit: Europe. Membership: Support group facilities in 15 European countries (Austria, Belgium, Denmark, Estonia, France, Finland, Germany, Ireland, Lithuania, the Netherlands, Norway, Slovenia, Sweden, Switzerland, and the UK). Volunteers: Numerous volunteers work for the Network and for featured support groups.

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CANCER

Nordic Cancer Union (NCU) http://www.ncu.nu Secretary General: Anne Lise Ryel

c/o Norwegian Cancer Society [until December 31st 2008] PO Box 4 Sentrum N-0101 Oslo Norway

T: 0047-22-86-66-00 F: 0047-22-86-66-10 Email: ncu@kreftforeningen.no

Founded in 1949 as a collaboration of regional cancer societies that aims to improve knowledge and understanding of cancer, encourage prevention, and achieve better results from cancer treatment and rehabilitation. Encourages collaborative research, and awards research grants.

“The unique Nordic environment is a favourable soil for collaboration, joint projects in research, and for documentation within the cancer field”

Geographic remit: The Nordic area. Latest annual revenue: (2007) Within the range Euros 1m to 1.5m. Non-pharma funding: (2006) Member societies, shared out as follows: Denmark (26%), Finland (11%), Iceland (1%), Norway (24%), and Sweden (37%). Membership: The national cancer societies of Denmark, the Faroe Islands, Finland, Iceland, Norway and Sweden (the Cancer Society of Åland has observer status).

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MENTAL HEALTH

Open Society Mental Health Initiative (MHI) http://www.osmhi.org Program Director: Judith Klein

Open Society Institute Oktober 6. u. 12 H-1051 Budapest Hungary

T: 0036-1-327-3100 F: 0036-1-327-3101 Email: mhi@osi.hu

Aims to ensure that people with a mental health problem and/or an intellectual disability are able to live in the community and participate in society. Part of George Soros’ grant-making foundation, the Open Society Institute. Provides financial and technical support for the development of communitybased alternatives to institutionalisation in the region.

“The MHI’s activities are focused on ending the institutionalisation of people with mental disabilities in the region by advocating for the closure of institutions, and for the development of community-based alternatives”

Geographic remit: Central and eastern Europe. Pharma funding: None. Non-pharma funding: The Open Society Institute. Membership: No members.

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GENETIC / RARE DISEASES

ORPHANET http://www.orpha.net Project manager: Dr Ségolène Aymé

INSERM SC11 102, rue Didot 75014 Paris France

T: 0033-(0)1-56-53-81-37 F: 0033-(0)1-56-53-81-38 Email: orphanet@orpha.net

A free-of-charge, searchable-by-disease-name database dedicated to information on rare diseases and orphan drugs. Supplies patients and others with information about rare diseases, specialist outpatient clinics, clinical laboratories, research projects, patient support groups, and relevant websites. Collects data from 35 European countries. Not a patient group, but included in this directory because of its value to patients.

“ORPHANET offers services for patients and their families, health professionals and researchers, patient support groups, and industry. ORPHANET aims to improve the diagnosis, management, and treatment of rare diseases”

Geographic remit: Europe. Latest annual revenue: (2007) Euros 1.8m. Pharma funding: Les Entreprises du Médicament (LEEM). Non-pharma funding: The Association Française contre les Myopathies, the Direction Générale de la Santé, the European Commission, the Foundation ‘Groupama pour la santé’, the Institut National de la Santé et de la Recherche Médicale, and the Union des Caisses d'Assurance Maladie. Membership: No members; run by a consortium of partners (one in every European country). Full-time staff: 35. Volunteers: None.

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GENETIC / RARE DISEASES

Osteogenesis Imperfecta Federation Europe (OIFE) http://www.oife.org President: Ute Wallentin

Sturzstrasse 15 D 96049 Bamberg Germany

T: 0049-951-60-3316 F: 0031-84-719-0961 Email: office@oife.org

Communicates the situation and needs of people with osteogenesis imperfecta (OI) to national and international organisations. The OIFE represents its members on a European (and international) level, and supports member societies by the exchange of information and experiences.

“The OIFE’s main purpose is to bring people with OI together, to collect and to publish information on osteogenesis, and to raise awareness about the needs of people with OI”

Geographic remit: Europe. Latest annual revenue: (2007) Expected to be under Euros 9,000. Non-pharma funding: Donations, and membership fees. Membership: 12 full member organisations (Belgium, Denmark, Finland, France, Germany, Italy, the Netherlands, Norway, Spain, Sweden, Switzerland and the UK). Also 9 associate member organisations and 2 supporting members. Full-time staff: None. Volunteers: All OIFE delegates and board members, plus one secretary. Country of registration: The Netherlands. Registration number: Eindhoven Chamber of Commerce, registration number V40240387.

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BLOOD DISORDERS PUBLIC HEALTH

Pan-European Blood Safety Alliance (PBSA) http://www.pbsalliance.org Chairman: Panos Englezos

PO Box 28807 2083 Nicosia Cyprus

T: 00357-22-319-129 F: 00357-22-314-552 Email: info@pbsalliance.org

Aims to raise awareness about the importance of blood safety, and to promote the rights of patients to receive the safest blood possible. Founded in 2003, and launched in 2004 by eight patient organisations from across Europe.

“Maintaining the safety of the European blood supply is of paramount importance to every European citizen. Our alliance hopes to motivate patients to work with their governments and health professionals to achieve this goal”

Geographic remit: Europe. Membership: Eight founding members: the European Cancer Patient Coalition (ECPC); the European Haemophilia Consortium (EHC); European Organisation for Rare Diseases (EURORDIS); the Foundation of the Promotion of Bone Marrow Transplantation Switzerland; Hepatitis Aid Austria; the International Myeloma Foundation (IMF); Sickle Cell Society UK; and the Thalassaemia International Federation (TIF). Volunteers: 5. Country of registration: Cyprus.

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INFECTIOUS

Polio Initiative Europa e.V. (PIE) http://www.polio-initiative-europa.de Chairperson: Dr Claus-Peter Kos

Bad Stebener Strasse 8 95138 Bad Steben Thierbach Germany

T: 0049-(0)9288-363 F: 0049-(0)9288-925-500 Email: dr-kos@web.de

Represents the interests of people with this viral infection. Collates information about scientific work on poliomyelitis, making it widely available (including to patients). Members provide each other with mutual support.

“The PIE supports scientific work in the field of poliomyelitis, measures to prevent the disease, and post-polio projects and networks”

Geographic remit: Europe.

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DISABILITY

Retina International http://www.retina-international.org President: Christina Fasser

Ausstellungsstrasse 36 CH-8005 Zurich Switzerland

T: 0041-1-444-10-77 F: 0041-1-444-10-70 Email: christina.fasser@retinainternational.org

A voluntary, charitable, umbrella association of national societies that seek a cure for retina pigmentosa, macular degeneration, Usher syndrome, and allied retinal dystrophies. Provides information, promotes public awareness, and encourages the foundation of new member societies.

“Mobility and participation in society are basic rights of European citizenship. These rights are, however, often denied to people with visual impairment”

Geographic remit: International. Membership: 14 member patient organisations in 14 European countries (Finland, France, Germany, Greece, Hungary, Ireland, Italy, the Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, and the UK). Candidate, observer, and interested organisations in Cyprus, Denmark, Estonia, Lithuania, Malta, Poland, and Romania.

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GENETIC / RARE DISEASES

Rett Syndrome Europe (RSE) http://www.rettsyndrome.eu President: Yvonne Milne MBE

Hartspool, Golden Valley Castlemorton, Malvern Worcestershire, WR13 6AA UK

T: 0044-(0)-1684-833-357 Email: y.m@cmail.co.uk

Maintains links with other Rett syndrome organisations, runs an annual meeting and holds European conferences (hosted in a member country). Disseminates up-to-date information about the disorder and about support for families and carers. Website has a notice board and contact information for enquiries (information translated).

“The RSE aims to represent the interests of people with Rett syndrome and their families throughout Europe, supporting them through promoting research, sharing knowledge, and increasing awareness of their health, educational, and social needs”

Geographic remit: Europe. Pharma funding: None. Non-pharma funding: Each member country’s annual contribution of Euros 300 (waived when a member is not able to make the contribution). Membership: 33 (European members in Austria, Belgium, Bosnia-Herzegovina, Bulgaria, Croatia, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Malta, the Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Spain, Sweden, Switzerland, Turkey, and the UK). Full-time staff: None. Volunteers: About 10. Country of registration: Luxembourg. Registration number: ASBL 20016102475.

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ADDICTION PUBLIC HEALTH

Smoke Free Partnership (SFP) http://www.smokefreepartnership.eu Advocacy Officer: Florence Berteletti Kemp

39/41 Rue d’Arlon 1000 Brussels Belgium

T: 0032-(0)2-238-53-63 F: 003-(0)2-238-53-61 Email: Florence.berteletti@ersnet.org

A strategic, independent, and flexible partnership between the European Respiratory Society [(ERS) http:// www.ersnet.org], Cancer Research UK [(CR-UK) http:// www.cancerresearchuk.org] and the Institut National du Cancer [(INCa) http://www.ecancer.fr]. The Partnership aims to promote tobacco control advocacy, and policy research at EU and national levels, in collaboration with other EU health organisations and EU tobacco control networks. “Smoking continues to be the largest single cause of death and disease in the EU, despite the progress that has been made in tobacco control”

Geographic remit: Europe. Non-pharma funding: Founding members. Membership: 3 (Europe, France, and the UK). Full-time staff: 2. Volunteers: None.

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GENERAL HEALTHCARE

Stichting Iatrogenic Europe Unite-Alliance (Stichting IEU-Alliance) http://www.ieu-alliance.eu Chairwoman: Sophie Hankes

The Netherlands

Email: office@ieu-alliance.eu

Champions patients in Europe who are victims of serious medical error, and lobbies European government bodies with the aim of encouraging them to make the prevention of medical mistakes a statutory obligation. Drew up a Declaration of Patients’ Rights in 2005, aiming to ensure that patients are fully protected within healthcare systems.

“National and international meetings are needed to hold dialogue with damaged patients (and their support groups) concerning the unnecessary problems facing iatrogenic patients— the most immediate being that of arranging genuine remedial specialist care. The present culture of ‘denial and cover-up’ needs to be changed to one of ‘openness and honesty’, in which health professionals are able to be truthful with their damaged patients”

Geographic remit: Europe. Full-time staff: 3. Country of registration: The Netherlands. Registration number: An official foundation registered at the Chamber of Commerce, Utrecht, number 30218429.

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HEART DISEASE / CIRCULATORY

Stroke Alliance for Europe (SAFE) http://www.safestroke.org President: Jos Slagers

SAFE Secretariat c/o The Stroke Association Stroke House, 240 City Road London, EC1V 2PR UK

T: 0044-(0)207-566-0310 Email: mail@safestroke.com

Formed in 2004 by 20 patient groups from across Europe. Objectives include promoting prevention and research, increasing public awareness and understanding of stroke, and advancing the priority given to stoke by policymakers and healthcare providers.

“SAFE’s first priority is information. We talk to politicians about stroke, to make them understand the importance of stroke prevention”

Geographic remit: Europe. Membership: 21. Full-time staff: None. Volunteers: None. Country of registration: Belgium. Registration number: 878717555.

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BLOOD DISORDERS

Thalassaemia International Federation (TIF) http://www.thalassaemia.org.cy Chairman: Panos Englezos

PO Box 28807 2083 Nicosia Cyprus

T: 00357-22-319-129 F: 00357-22-314-552 Email: thalassaemia@cytanet.com.cy

Supports the development and implementation of effective control programmes, and the establishment of educational programmes, including the training of health professionals and the distribution of educational materials.

“Unity is our strength. Equal access to quality healthcare for every patient with thalassaemia across the world”

Geographic remit: Europe (and worldwide). Non-pharma funding: Donations, and membership fees. Membership: 96. Full-time staff: 8. Volunteers: 18. Country of registration: Cyprus. Registration number: 30576.

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2nd edition of the European Patient Group Directory