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15 Years ILAE/IBE/WHO Global Campaign Against Epilepsy “A partnership that works”

1997-2013

Stand up for epilepsy®

Hanneke M. de Boer & Edward H. Reynolds

1


FOREWORD Epilepsy affects the lives of millions of people of all ages around the world. There are more than 50 million people with epilepsy worldwide. Epilepsy is an unpredictable and potentially devastating group of diseases that can cause seizures, brain injury, and cognitive and mental disabilities. Epilepsy has long been recognized as a condition associated with significant stigma and discrimination, in both developed and developing countries. As a result many people with epilepsy may attempt to hide their condition. This has far-reaching implications in terms of diagnosis, effective management, research, and advocacy. While large strides have been made, there is still much work to be done in terms of public education, reducing the social stigma surrounding epilepsy, and improving access to treatment. Under the umbrella of the Global Campaign Against Epilepsy, the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) have partnered to attempt to bridge these gaps. The collaboration between IBE, ILAE and WHO has given the campaign the opportunity to build a framework for concerted action on a global, regional and national level to raise awareness and reduce the treatment gap with the purpose of bringing epilepsy “out of shadows”. It is important to continue to advocate that governments make epilepsy a priority. Starting with proper diagnosis, we also need to ensure that we take advantage of the fact that there are cost-effective interventions available for epilepsy treatment. Essential medicines need to be readily available, and an infrastructure must be in place to support people with epilepsy. As research progresses, better treatments, and possibly cures will be discovered. Working with all the partners, governments, NGO’s and the private sector, the Campaign aims at improving public awareness and decreasing stigma, and increasing access to care and services so that no person’s life is affected negatively by epilepsy. Together, speaking with one voice: We “stand up for epilepsy”.

Mike Glynn - IBE

Solomon (Nico) Moshé - ILAE

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Shekhar Saxena – WHO


Contents Page nr. Acknowledgements

5

Preface

7

1. Background

10

2. Introduction

11

2.1

The Global Burden of Epilepsy

11

2.2

The Global Partners

12

2.3

Birth of the Concept

12

2.4

Mission, Strategy and Objectives

13

2.5

Launch of the Campaign

14

3. Phase I: 1997 – 2001

4.

15

3.1

Cabinet Paper

15

3.2

Regional Conferences

15

3.3

Raising Awareness

16

3.4

Impact of the Campaign on a National Level

16

3.5

WHO Technical Consultative Meetings

16

Phase II: 2001-2005

18

4.1

The Launch

18

4.2

Regional Reports on Epilepsy

19

4.3

Demonstration Projects

19

4.4

Strategic Planning Meetings

20

5. Phase III: 2005 – 2009

22

5.1

Demonstration Project

22

5.2

Project on Legislation and Epilepsy

22

5.3

Project on Stigma

23

5.4

The Atlas Project

26

5.5

Development of Evidence-based Guidelines

28

5.6

WHO Project on the Burden of Epilepsy

29

5.7

Measuring the Impact of Campaign Activities on a National Level

30

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6. Phase IV: 2009 – 2013

33

6.1

Global Campaign Taskforce

33

6.2

Demonstration Projects (cont.)

34

6.3

Initiation of new Demonstration Projects

35

6.4

Regional Reports (cont.)

35

6.5

Assessment of Country Needs and Resources on Epilepsy

36

6.6

Project on Legislation and Epilepsy (cont.)

37

6.7

Development of Evidence-based Guidelines (cont.)

37

6.8

Project on the Global Burden of Disease (cont.)

37

6.9

Stakeholders meetings in the African, Latin American, Eastern Mediterranean, European and South East Asian/Western Pacific (Asian/Oceanian) Regions

7. Appendices

37

40

7.1

Appendix I

Cabinet Paper

40

7.2

Appendix II

Regional Declarations

42

7.3

7.4

7.5

7.2.1

AFRO Region

42

7.2.2

AMRO Region

44

Latin America

44

North America

46

7.2.3

EMRO Region

48

7.2.4

EURO Region

50

7.2.5

SEARO/WPRO Regions – Asian Oceanian Region

53

Appendix III

Demonstration Projects

55

7.3.1

AFRO Region

55

7.3.2

AMRO Region

61

7.3.3

EURO Region

71

7.3.4

SEARO Region

78

7.3.5

WPRO Region

81

Appendix IV

ILAE/IBE Global Outreach Taskforce

87

7.4.1 Goals and Recommendations

87

Appendix V

90

Recommendations from Stakeholders Meetings

7.5.1

AFRO Region

90

7.5.2

AMRO Region

91

7.5.3

EMRO Region

92

7.5.4

EURO Region

93

7.5.5

SEAROWPRO Region - Asian Oceanian Region

94

8. Publications

95

9. References

108

ACKNOWLEDGEMENTS

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This history was prepared by Hanneke M. de Boer and Edward H. Reynolds, the first two (co) chairs of the Campaign Secretariat. They were supported by Helen Cross and Shichuo Li (Co-chairs of the ILAE/IBE Global Outreach Taskforce),. Mike Glynn, Nico Moshé, Emilio Perucca and Tarun Dua, the members of the Campaign Secretariat, as well as Carlos Acevedo and Emilio Perucca (Secretaries General of IBE and ILAE respectively) provided valuable advice. People who have supported the Campaign since its conception include (in alphabetical order): World Health Organization: Headquarters Geneva::

Tarun Dua, Leonid Prilipko(†), Benedetto Saraceno, Shekhar Saxena

Regional Advisors:

Thèrèse Agossou, J.M. Caldas de Almeida, Vijay Chandra, Itzhak Levav, Claudio Miranda, Sebastiana da Gama Nkomo, Helen Herrman, Custodia Manlhate, Ahmad Mohit, Matthijs Muijen, Rangaswamy Srinivasa Murthy, Khalid Saeed, Jorge J. Rodriguez, Wolfgang Rutz, Xiangdong Wang, M.T. Yasamy.

  ILAE Leadership:

Giuliano Avanzini, Jerome Engel JR, Nico Moshé, Emilio Perucca, Edward Reynolds, Peter Wolf

IBE Leadership:

Hanneke M. de Boer, Mike Glynn, Richard Holmes, Philip Lee

ILAE/IBE Global Outreach Taskforce: Carlos Acevedo, Raidah Al Baradie, Charles Begley, Hanneke de Boer (Campaign Co-ordinator), Helen Cross (co-chair), Tarun Dua (WHO ex officio), Shichuo Li (co-chair), Nico Moshé, Emilio Perucca (ex officio), Steve Schachter, Sam Wiebe (ex officio), Anthony Zimba ILAEIBE Global Outreach Taskforce: Junior members:

Antonietta Coppola, Ding Ding, Li Li Min,

Amira Masri, José F. Téllez Zenteno Regional Focal Points:

Robert Cole, Athanasios Covanis, Colin Doherty, Asma Enright, Najib Kissani, Janet Mifsud, Ernest Somerville, Carol d'Souza, Alejandro Scaramelli, H.V. Srinivas, Bill Theodore

Both ILAE and IBE Regional Commissions and Committees provided support and advice concerning regional and local issues. The ILAE chapters and IBE members, who, in many countries, developed their own national or local “Out of the Shadows” initiatives, but also assisted with many of the global projects, such as the Atlas Project and the Project on Legislation.

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We also need to thank:  the principal investigators in the Demonstration Projects,  the organisers of the Regional Conferences on Epilepsy as a Public Health Priority, the people who worked on the Regional Declarations and those who were involved in the development of the Regional Reports  the members of the various taskforces and working groups, such as the Project on Legislation, the Guidelines on Neonatal Seizures, etc.  Governments who supported the GCAE Demonstration Projects and other activities within their countries Furthermore WHO Collaborating Centres: OASI Dept. of Mental Retardation, Unit of Neurology and Clinical Neurophysiopathology SEIN - Epilepsy Institute in the Netherlands Finally we need to thank the numerous individuals who assisted the Campaign in larger and smaller projects and activities. Without the help, advice and support of all of the above and the thousands of unnamed people who contributed to the Campaign; who “stood up against epilepsy” thus contributing to a better quality of life for people with epilepsy and bringing people with epilepsy “out of the shadows” the Campaign would not have been the success it turned out to be.

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PREFACE Epilepsy is a chronic non-communicable disorder of the brain that affects people of all ages. Worldwide an estimated 50.000.000 people suffer from this disorder. Epilepsy imposes enormous physical, psychological, social and economic burdens on individuals, families, communities and countries, compounded by the misunderstanding, fear and stigma which has prevailed for millennia and is still widespread today. These problems are universal but are greatest in the developing world where 85% of people with active epilepsy live and of whom three quarters receive no adequate diagnosis or treatment, the so-called treatment gap. This is all the more regrettable as up to 70% of people with epilepsy could be seizure-free with relatively cheap treatment. The above facts and figures led to the start of a unique partnership between ILAE, IBE and WHO: the ILAE/IBE/WHO Global Campaign Against Epilepsy, with its mission: “To improve the acceptability, treatment, services and prevention of epilepsy worldwide. The Campaign was launched in 1997, just over 15 years ago at the time of the publication of this document. Thus it seems timely to write down the history of the Campaign, so it will not be forgotten and those who worked for it so hard, be remembered. This CD-Rom contains 15 years of the work of, or in name of, the Campaign, which was launched in 1997. The Campaign can be divided into 4 phases. During Phase I the Campaign focused on the objectives of increasing awareness, creating acceptance and improving education. At the regional level a major activity was a series of regional Conferences and Declarations designed to raise awareness, acceptance and education about epilepsy and the Campaign. The successful outcome of this phase is reflected in the milestones summarised below which led to the higher priority given to the Campaign by WHO, and culminated in the second phase plans and high profile launch in 2001. The launch of Phase II of the Campaign was led by the Director General of WHO, Dr. Gro Harlem Brundtland. Her address to this Launch is probably the most important political public health statement about epilepsy in the history of the disorder. A central feature of the four year Phase II was the development of Demonstration Projects in order to illustrate good practice in providing services to people with epilepsy and which may be used as models of what can be achieved. Such projects were initiated, implemented and finalised in Brazil, China, Senegal and Zimbabwe. During this phase Regional Reports were developed as tools for advocacy and instruments for dialogue in order to improve epilepsy care and change attitudes by bringing people with epilepsy “out of the shadows” in all Regions of the world. At the end of Phase II Strategic Planning Meetings were organised by the Campaign Secretariat involving the Executive Committees of IBE and ILAE and a number of international experts in 2004 and 2005 to discuss progress of on-going activities, start planning for Phase III and discuss fundraising activities. A number of recommendations were made which were incorporated in Phase III of the Campaign.

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Phase III commenced in 2005, following the elections of the new ILAE/IBE Executive Committees. During this period one new Demonstration Project was initiated (Georgia), and after some delay, implemented. One of the recommendations from the Strategic Planning Meetings concerned the development of other projects besides those on the reduction of the treatment gap, one of which was a project on legislation. Until that point in time, nowhere in the world had comprehensive studies been undertaken to determine the presence or absence, effectiveness or ineffectiveness of legislation in promoting and protecting the civil and human rights of people with epilepsy, which was the reason for the ILAE and IBE Executive Committees to follow up on this recommendation. Under the leadership of Prof. A. Jacoby a pilot project on stigma in epilepsy was set up. This project involved ethnographic studies to explore prevailing beliefs and attitudes to epilepsy in two developing countries, China and Vietnam. WHO launched the Project "Atlas" in 2000 aiming at collecting, compiling and disseminating information and data on the existing resources and services. Because epilepsy care is one of the priority areas of WHO, it was decided to expand the Project "Atlas" which led to the publication of the “Atlas: Epilepsy Care in the World”. A Proposal for an Algorithm for Diagnosis and Treatment of Neonatal Seizures in Developing Countries was developed by an international panel of experts in seizure management and guideline development from ILAE, IBE and WHO and was published in Epilepsia in June 2007. During the 12 years of the Campaigns’ existence many global, regional and local activities were conducted within its framework. However the Campaign has also inspired and stimulated ILAE and IBE chapters and members to undertake their own activities, using the Campaign’s name, its eclipse logo and/or its “Out of the Shadows” slogan. A survey was conducted to identify, classify and quantify activities undertaken at national/local level in support of, or on behalf of, the Global Campaign and to make a limited assessment about the impact of that activity. Phase IV started in 2009 when the newly elected ILAE/IBE presidents decided that, because the success of the Global Campaign is of paramount importance to both IBE and ILAE, they would lead the effort together, with Tarun Dua (representing WHO), thus forming the Campaign Secretariat. Furthermore they decided that in order to expand activities, “more hands on deck" would be imperative thus they set up a Global Campaign Taskforce to help and achieve this goal. One of the first charges of the Taskforce was the development of a strategic plan for the Campaign. The Demonstration Project in Georgia was completed and a final report on the project in China was launched. New Projects were initiated in Ghana and Viet Nam, whilst the feasibility of Projects in Cameroon and India were investigated. The last two Regional Reports (EMRO and EURO) were completed and launched in the respective Regions.

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In 2011, it was decided to initiate a project to conduct needs and resource assessment specific to epilepsy in Tajikistan by the GCAE in collaboration with the WHO European Regional Office, and WHO Country Office in Tajikistan. The aim of this project was to complete a resource assessment and treatment gap analysis in Tajikistan. The documents that had been developed during the previous phase of the Campaign as a result of the Project on Legislation were finalised and produced on a CD-Rom. Following the development and publication of the proposal of the algorithm on neonatal seizures, evidence based guidelines for the management of neonatal seizures were developed. The Guidelines were published in 2011. Within the new WHO Global Burden of Disease project, comprehensive estimates of the burden of epilepsy, its disabling sequelae and their role as a risk factor for other diseases and injuries are being developed. The Global Campaign Against Epilepsy, through participation of ILAE, contributed to this project Regional Stakeholders meetings were organised with the participation of the WHO Regional Advisors for Mental Health, the leadership of ILAE and IBE and regional stakeholders in all regions during this phase of the Campaign. The first 39 pages of this document show the reader what the Global Campaign is and does and how it came about. In the second part the various projects are described more in-depth for those who want to know more, or would like to get involved in new projects themselves. In any case, all these activities show that the collaboration between IBE, ILAE and WHO has given the Campaign the opportunity to build a framework for concerted action on global, regional and national levels to raise awareness and diminish the treatment gap.

Helen Cross, Co-Chair

Shichuo Li, Co-Chair

Global Outreach Taskforce

Global Outreach Taskforce

9

Hanneke de Boer, Global Campaign Co-ordinator


BACKGROUND

The International League Against Epilepsy (ILAE) The ILAE is the world's preeminent association of physicians and other health professionals working towards a world where no persons' life is limited by epilepsy. ILAE's mission is to ensure that health professionals, patients and their care providers, governments, and the public world-wide have the educational and research resources that are essential in understanding, diagnosing and treating persons with epilepsy. The vision of ILAE is: A world in which no person's life is limited by epilepsy.

The International Bureau for Epilepsy (IBE) IBE is the world’s leading organisation for people with epilepsy, their families and professionals interested in the medical and non-medical aspects of epilepsy. Although the advances in medical treatment have brought the opportunity for a normal life to a substantial majority of people with epilepsy, social factors complicate this process and frequently limit the person with epilepsy from participating fully in society. This varies from country to country, because of the diverse degrees of prevailing prejudice, lack of understanding and cultural backgrounds. It is the commitment of the national epilepsy associations to change and improve this situation. The IBE offers support to reach this goal. IBE’s goal is: To improve the quality of life of all people with epilepsy and their carers.

The World Health Organization The Constitution of the World Health Organization (WHO) came into force on 7 April 1948. WHO's objective is the attainment by all peoples of the highest possible level of health. The Constitution defines health as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

The ILAE/IBE/WHO Global Campaign Against Epilepsy (GCAE) In 1997, the three afore mentioned organisations joined forces in an attempt to, in partnership, raise epilepsy to a level of awareness that had not been achieved ever before, despite all efforts by each of the separate organisations and their affiliates. This partnership is the ILAE/IBE/WHO Global Campaign Against Epilepsy, which has as its mission statement: To improve the acceptability, treatment, services and prevention of epilepsy worldwide. The collaboration between IBE, ILAE and WHO has given the Campaign the opportunity to build a framework for concerted action on a global, regional and national level to raise awareness and diminish the treatment gap. The ultimate goal of the Campaign is to close the treatment gap in epilepsyi.

i

The difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in a given population at a given point in time, expressed as a percentage.

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2. Introduction The ILAE/IBE/WHO Global Campaign Against Epilepsy (GCAE) was launched in the summer of 1997 and has now almost completed its fourth phase. Its ambitious aim has been to bring together three global organisations, the International League Against Epilepsy (ILAE), representing professionals, the International Bureau for Epilepsy (IBE), on behalf of patients and public, and the politically influential World Health Organization (WHO), in a joint partnership and initiative to address the hidden, neglected but global problems of people with epilepsy. This objective is reflected in the Campaign title and logo, “Epilepsy: Out of the Shadows”.

2.1 The Global Burden of Epilepsy. Epilepsy is a truly unique global burden affecting all ages, races, social classes and countries. As one of the worlds most common serious brain disorders, epilepsy affects at least some 50 million people worldwide, Epidemiological studies have shown that it is uniformly distributed around the world with only slight variations in prevalence influenced by local environmental factors such as trauma associated with wars, road traffic accidents, poor obstetric care; or brain infections associated with poverty, malnutrition and epidemics; or age related diseases in more developed countries. Historically it can be traced to all ancient civilisations. For example Babylonian descriptions of epileptic seizures in the second millennium BC are very similar to those we see today1. Epilepsy imposes enormous physical, psychological, social and economic burdens on individuals, families, communities and countries, compounded by the misunderstanding, fear and stigma which has prevailed for millennia and is still widespread today. These problems are universal but are greatest in the developing world where 85% of people with active epilepsy live and of whom, three quarters receive no adequate diagnosis or treatment, the so-called treatment gap (Table 1)2,3,4 This is all the more regrettable as up to 70% of people with epilepsy could be seizure-free with relatively cheap treatment. Table 1: Treatment gap studies in developing countries 1998-19965

Country Ecuador Ethiopia Guatemala India Pakistan Rural Urban Philippines Sudan

Treatment gap 88% 98% 69% 75% 94% 98% 73% 85% 60%

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2.2 The Global Partners. Following the foundation of ILAE in 1909, and its struggle to survive between the two world wars, the organisation grew steadily in the second half of the 20th century. Between 1993 and 1997 the number of national ILAE Chapters grew from 43 to 65ii, with some Chapters in every continent, thus making it by then a truly global organisation. Likewise IBE, which was founded in 1961, expanded steadily such that by 1997 its 60 Chaptersiii also reflected a similar international dimension. By the mid-1990’s both the League and the Bureau were developing regional commissions and structures. Furthermore both the League and the Bureau were Non-Governmental Organisations (NGO’s) in official relationship with WHOiv, the United Nations organisation, headquartered in Geneva, responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends. Over the years the League and the Bureau had established very good working relations, with separate but interlocking executive committees, which enabled them to collaborate on projects of common interest, such as International Congresses and the Global Campaign, while pursuing other matters of related but separate interest independently.

2.3 Birth of the Concept. As Presidents of ILAE and IBE Edward Reynolds and Hanneke de Boer attended the annual meetings of the Neurosciences NGO’s in association with WHO, which were held in Geneva in December 1993 and 1994. It seemed that these were merely forums for the exchange of information, but it occurred to Edward Reynolds and almost simultaneously to Dr. Leonid Prilipko (WHO officer in responsible with WHO for neurology and neuroscience) that the potential existed for a much more active and effective relationship between the NGO’s and WHO. A first meeting on this subject took place in Geneva on January 16th 1996. From ILAE were involved Dr. Reynolds and Dr. Pierre Jallon, chair of the ILAE Commission on Developing Countries, from WHO, Dr. Prilipko and furthermore, Professor Costa e Silva (Director of the WHO Department on Mental Health) and Professor Shichuo Li (Chairman of the WHO Executive Board). There was a considerable meeting of minds that day in which the concept of the ILAE/IBE/WHO Global Campaign Against Epilepsy was born6. In June 1996 the ILAE Commission on Developing Countries arranged a two day Workshop in Geneva with experts from the ILAE, IBE and WHO

To date: ILAE has 111 chapters To date: IBE has 92 full and 34 associate members iv WHO has 193 Member States ii

iii

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From left to right: Pierre Jallon, Edward Reynolds and Leonid Prilipko during the ILAE Cie. on Dev. Countries workshop


and representatives from every continent. Epidemiological, medical, social and economic aspects of epilepsy in developing countries were reviewed as a platform on which to build the Global Campaign Against Epilepsy7.

Workshop ILAE Commission on Developing. Countries

Both the League and Bureau agreed that the potential benefits of the Campaign for people with epilepsy everywhere outweighed the potential challenges and risks of the Campaign, which was then formally announced at the ILAE European Congress in The Hague, the Netherlands and at the ILAE/IBE Asian and Oceanian Congress in Seoul, South Korea, in September 1996.

2.4 Mission, Strategy and Objectives. The mission statement of the Campaign was and is: “To improve the acceptability, treatment, services and prevention of epilepsy world wide”. The objectives of the Campaign are: 

to increase the public and professional awareness of epilepsy as a universal treatable brain disorder

to raise epilepsy on to a new plane of acceptability in the public domain

to promote public and professional education about epilepsy

to identify the needs of people with epilepsy on a national and regional basis

to encourage governments and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services and prevention

The Strategy of the Campaign includes two parallel and simultaneous tracks: 1) raising public and political awareness and understanding of epilepsy, and 2) encouraging and supporting Departments of Health in identifying needs and promoting education, training, treatment, services, research, and prevention nationally.

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The Campaign includes inter-related global, regional and national components. WHO has six regional offices that are closely integrated with the Headquarters in Geneva. The League and the Bureau have their own regional structures and activities that can interact with WHO at regional levels. Ultimately the global and regional activities of the Campaign are designed to stimulate, encourage and assist national governments and epilepsy organisations to develop their own “Out of the Shadows” Campaigns, based on their own local knowledge of the problems and solutions for people with epilepsy.

The Campaign’s ultimate objective is to ensure that governments and health care providers place epilepsy on the health and development agenda in order to formulate and implement cost–effective responses to epilepsy. The indicators of its success will be the proportion of targeted countries that have implemented reforms in epilepsy care and the number of countries that have increased their budget for epilepsy care.

2.5 Launch of the Campaign. The first phase of the ILAE/IBE/WHO Campaign to bring epilepsy out of the shadows was formally launched in the presence of the WHO, International League and Bureau leadership in Geneva on June 19th 1997 and again two weeks later on July 3rd 1997 in Dublin at the 22nd ILAE/IBE International Congress in the presence of the Irish President, Mary Robinson (later UN Commissioner for Human Rights), John Bowis, former UK Minister of Health; Tony Coelho, former US Congressman, with epilepsy; Mary Benotti, Irish MEP; Joe Doyle, Irish Senator and the Lord Mayor of Dublin, who also had epilepsy.

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3. Phase I: 1997 – 2001 The first phase of the Campaign focused on its first three objectives i.e. increasing awareness, creating acceptance and improving education. The successful outcome of this phase is reflected in the milestones summarised in Table 2 and the higher priority given to the Campaign by WHO, which culminated in the second phase plans and launch8. Table 2. “Out of the shadows” campaign programmes9 Phase 1 GLOBAL

Awareness Raising/Education Cabinet Paper, December 1999, leading to: 2nd Phase Launch, February 2001

REGIONAL

Regional Conferences/Declarations Europe, October 1998 Africa, May 2000 Latin America, September 2000 Asia/Oceania, November 2000 North America, December 2000 Eastern Mediterranean Region, March 2003

NATIONAL

Over 50 countries local initiatives Preparation for Demonstration Projects in selected countries

. 3.1 Cabinet Paper At the global level the most important achievement was the development and acceptance in December 1999 of a “Cabinet Paper” (Appendix 1) on the Global Campaign which raised the status of the Campaign to the highest attainable level within the priorities of the newly reorganised WHO under Dr. Gro Harlem Brundtland. Epilepsy was the first, and to date the only, neurological disorder to be accorded this status. The ILAE/IBE/WHO Global Campaign had become the model for other NGO’s who aspire to Global Campaigns for their own disorder, for example, for Headache. Indeed the ILAE/IBE/WHO Global Campaign Against Epilepsy was at the forefront of the WHO’s 2001 World Health Day and Report on Mental and Brain Disorders.

3.2 Regional Conferences At the regional level a major activity was a series of regional Conferences and Declarations designed to raise awareness, acceptance and education about epilepsy and the Campaign. The first of these was the European Conference on “Epilepsy as a Public Health Priority” which resulted in the development of the European Declaration on Epilepsy held in Heidelberg, Germany in October 1998. The conference was attended by more than 100 professionals, patients/public and politicians from all over Europe. In the

15


year 2000 similar Regional Conferences and Declarations, based on the European format, were developed in Africa in Senegal, Latin America in Chile, Asia and Oceania in India and North America in the United States. All Regional Declarations can be found in Appendix 2. In all, more than 1,200 representatives from WHO, ILAE and IBE, from other non-governmental organisations and UN agencies, from governments, universities and health care providers from well over 130 countries, representing millions of people with epilepsy have participated in these regional Conferences and Declarations.

Regional Conferences in Asia Oceania (New Delhi, India) and Latin America (Santiago de Chile) 2000

3.3 Raising Awareness In order to raise awareness for the Campaign, for epilepsy in general, the treatment gap and the social, cultural and economic burden for people who have this condition, their relatives and society as a whole, many sessions have been and are being organised during international congresses, among others during the bi-annual International and Regional ILAE and IBE congresses. Campaign articles have been published in peer reviewed journals on the results of the Demonstration Projects and a number of stand-alone publications were prepared (see chapter 8: Publications).

3.4 Impact of the Campaign on a National Level One of the main objectives of these global and regional activities has been to encourage national ILAE Chapters and IBE members and Departments of Health to develop their own national or local “Out of the Shadows” initiatives. A subsidiary objective has been to stimulate the establishment of new ILAE Chapters and IBE members in countries where they did not exist. By 2001 50 countries had begun local projects under the umbrella of the Campaign.

3.5 WHO Technical Consultative Meetings Technical Consultative Meetings were organised by the WHO Regional Offices in the AFRO, SEAERO and WPRO Regions in 2001 and 2002. The objectives of the meetings included: 

To identify priority interventions for the development of country action plans .

To define and strengthen partnerships among the key players of the GCAE, namely the

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World Health Organization, International League Against Epilepsy, International Bureau for Epilepsy and other relevant organizations or individuals at a regional level. 

To discuss specific activities such as Demonstration Projects and Regional Reports.



To develop the Regional Reports.

Poem written by Kathryn Pahl (South Africa) at the end of the Technical Consultative Meeting in Harare during which the African Regional Report was finalised

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Phase II: 2001-2005 4.1 The Launch. Following the success of Phase I, and the elevation of the Campaign to one of WHO’s highest priorities, a high profile launch of the second phase of the Campaign was held in Geneva on February 12th 2001 led by the Director General of WHO, Dr. Gro Harlem Brundtland. Also participating were the executive leadership of the League, Bureau and the division of non-communicable diseases and mental health of WHO, together with representatives of 13 missions of WHO country members, 24 national ILAE/IBE Chapters/Members, 4 NGO’s in neuroscience/neurology and 17 private sector organisations.

Dr. Gro Harlem Brundtland, Director General WHO (1998-2003)

Dr. Brundtland’s address to this Launch (Appendix 7) is probably the most important political public health statement about epilepsy in the history of the disorder. Emphasising the scale of the problem, especially in developing countries, she indicated that epilepsy was at the forefront of her plans for the 2001 World Health Day and Report on mental health and brain disorders. The collaboration between the International Bureau for Epilepsy, the International League Against Epilepsy and WHO has shown that when people with different backgrounds and roles come together with a shared purpose, creativity is released and expertise is used in innovative and constructive ways. (Dr. Gro Harlem Brundtland, Presentation during Launch Phase II ILAE/IBE/WHO Global Campaign Against Epilepsy, Geneva, Switzerland, 13 February 2001) By concentrating on increasing awareness, creating acceptance, and improving education in Phase I, the foundations for achieving the other two Campaign objectives i.e. identifying and addressing needs at national government level had been laid. A central feature of the four year Phase II would be the development of Demonstration Projects in order to illustrate good practice in providing services to people with epilepsy and as models for other countries beginning in China, Senegal, Zimbabwe and Brazil. The proceedings of the Launch included the history of the Campaign, the plans for Phase II, global medical, social political views and also a patient’s view. The Launch was followed by a half-day symposium on the challenges facing the Campaign, including the global burden of epilepsy, the psychosocial burden, the treatment gap, Demonstration Projects, Regional Declarations and “Regional Reports” and the problems of epilepsy in children and adolescents10 .

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4.2 Regional Reports on Epilepsy A questionnaire was developed to gather the information on the national profile, resources and care for epilepsy by a number of experts, covering the profile of epilepsy care available in different countries. This information has been included in Regional Reports to support the implementation of the GCAE in several WHO regionsv. These Reports are working papers and provide basic knowledge on epilepsy, including the epidemiological burden, as well as proposing the next steps to be taken. The Reports provide a panoramic view of epilepsy in the Regions, outlining the current challenges and recommendations to address the problems by the Campaign partners. The Reports are intended to be tools for advocacy and instruments for dialogue with governments, health care providers, donors, other partners and the general public in order to improve epilepsy care and change attitudes by bringing people with epilepsy “out of the shadows” in all Regions of the world. During this phase such reports were published in the AFRO, AMRO, SEARO and WPRO Regions. For information on the reports from the EMRO and EURO Regions see the chapter on Regional Reports in Phase IV.

4.3 Demonstration Projects. Demonstration Projects illustrate good practice in providing services to people with epilepsy. They also serve as models of what can be achieved. The aims of Demonstration Projects are, to: •

Reduce the treatment gap and the social and physical burden of epilepsy

Educate health personnel

Dispel stigma

Eradicate preventable causes of epilepsy

Develop models for promotion of epilepsy control world wide

Integrate epilepsy care in health systems

In general terms, each Demonstration Project has four aspects: 1. assessing whether knowledge and attitudes of the population are adequate, correcting misinformation and increasing awareness of epilepsy and how it can be treated (Educational and social intervention); 2. assessing the number of people with epilepsy and estimating how many of them are appropriately treated (Epidemiological assessment and case-finding); 3. ensuring that people with epilepsy are properly served by health personnel equipped for their task (Service delivery and intervention); v

Regional Reports published during Phase II of the Campaign: AFRO, AMRO, SEARO, WPRO

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4. analysing the outcome and preparing recommendations for those who wish to apply the findings to the improvement of epilepsy care in their own and in other countries (Outcome measurement). The ultimate goal of the Demonstration Projects is the development of a variety of successful models of epilepsy control that will be integrated into the health care systems of the participating countries and regions and, finally, applied on a global level.

Awareness raising as part of the Demonstration Project in Senegal

During Phase II of the Campaign Demonstration Projects were initiated in the WHO African, American and Western Pacific Regions as was a National Project in the American Region. One further project was developed in Africa (Congo) and projects were developed in the Southeast Asian Region under the auspices of the respective Regional WHO Offices. (More information on Demonstration Projects can be found in Appendix 3 and in the chapters on Phase III and IV).

4.4

Strategic Planning Meetings in Preparation of Campaign Phase III

Strategic Planning Meetings were organised by the Campaign Secretariat involving the Executive Committees of IBE and ILAE and a number of international experts in Switzerland in 2004 and 2005: •

to discuss progress of on-going activities

to start planning for phase III

to discuss fundraising activities

The following recommendations were made: Technical •

Develop surveys as a marketing device for the Campaign

Increase the involvement of Regional Commissions/Committees

Increase fundraising activities

Update and upgrade the Campaign web site

International congresses: GCAE sessions to focus on various topics

Logo to be protected/registered

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Strategic •

Continuation of Demonstration Projects aiming at reducing the treatment gap

Development of Demonstration Projects on new topics, i.e.: •

Legislation

Stigma

Surgery

This led the GCAE towards a third phase during which the on-going actions (especially the Demonstration Projects) would be complemented by other initiatives aimed at reducing the burden of epilepsy across the world.

Discussions during Strategic Planning Meeting

Finally several new projects were initiated by the end of Phase II, which materialised in Phase III of the Campaign. These include: •

Atlas Project

Development of evidence-based guidelines

WHO Project on the Burden of Epilepsy

Measuring the impact of Campaign activities at a national level

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5.

Phase III: 2005 - 2009

Phase III of the Campaign commenced in 2005, following the elections of the new ILAE and IBE Executive Committees. A number of new activities started and others continued from phase II into phase III.

5.1 Demonstration Project (cont.) One new Demonstration Project was initiated in Georgia, the first one in Europe, and after some delay implemented. (For more information on this Demonstration Project see Appendix III).

5.2 Project on Legislation and Epilepsy

Background People with epilepsy often experience limitations to their enjoyment of economic, social and cultural rights. They have many unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate health care. Legislation is an important means of addressing these problems and challenges. Well-crafted legislation based on internationally accepted human rights standards can prevent violations and discrimination, promote and protect human rights, enhance the autonomy and liberty of people with epilepsy and improve equity in access to health care services and community integration. Legislation can serve to legally enforce the goals and objectives of policies and programmes related to epilepsy. The current reality, however, is that the laws that affect the lives of people with epilepsy are often outdated. They frequently fail to promote and protect human rights adequately, and they sometimes actively promote the violation of rights11. To date, nowhere in the world have comprehensive studies been undertaken to determine the presence or absence, effectiveness or ineffectiveness of legislation in promoting and protecting the civil and human rights of people with epilepsy.

International ILAE, IBE and WHO experts on legislation and epilepsy meet in Geneva to develop the Global Campaign Epilepsy and Legislation Project

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The project was co-ordinated by SEIN - Epilepsy Institute in The Netherlands, a WHO Collaborating Centre for Research, Training and Treatment in Epilepsy in Heemstede, The Netherlands. The aim of the project was to: “collect information on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and provision of appropriate health care, from countries all over the world, in order to review the comprehensiveness and adequacy of these legal measures in promoting and protecting the civil and human rights of people with epilepsy�. The results of the project would be useful for policy makers, health planners, administrators, legislators, lawyers, health professionals and patient groups at a national, regional as well as international level. They will help reducing discrimination and stigma associated with epilepsy

Objectives: Identify key human right issues that are being overlooked and need to be addressed at national/regional levels. Develop an effective reference guide for professionals working in the area of epilepsy, lawyers and policy-makers as well as advocacy and human rights organisations working in the interest of people with epilepsy at national as well as international levels. Provide instruments for advocacy and lobbying to improve human rights conditions for people with Epilepsy. Provide useful tools to reform laws and regulations related to epilepsy thus leading to better care and services and improved living conditions for people with epilepsy throughout the world Increase awareness among people with epilepsy of the possibilities for better reintegration into society.

Methodology A questionnaire was developed for collection of data on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and provision of appropriate health care from countries all over the world, in order to review the comprehensiveness and adequacy of these legal measures in promoting and protecting the civil and human rights of people with epilepsy. Countries were selected from each of the 6 WHO Regions for data collection in collaboration with the ILAE/IBE regional commissions/committees and WHO. Data were received as follows: Table 3 Number of questionnaires sent Number of countries who have been sent a questionnaire Number of questionnaires returned Number of countries who have returned a questionnaire Number of questionnaires entered into data base Number of countries with completed entries

83 55 54 48 50 Group of experts preparing the : Legislation documents Basic

45

principles for Epilepsy Legislation and Guidance Instrument for developing, adopting and implementing epilepsy legislation

23


Results The following documents have been being developed for publication during this phase of the Campaign: 

Basic principles for Epilepsy Legislation: setting out basic principles and rights that should be considered when drafting legislation related to epilepsy, with due respect given cultures or legal traditions.

Guidance Instrument for developing, adopting and implementing epilepsy legislation: outlining the preliminary steps that may be taken before embarking on the drafting process, as well as the steps for drafting, adopting and implementing epilepsy related legislation.

5.3 Project on Stigma - Collaborative Research on Epilepsy Stigma (CREST)

Background Understanding and dispelling stigma is one of the stated aims of the Global Campaign Against Epilepsy (GCAE) ‘Out of the Shadows”. Within the Campaign in 2003, a grant application for a pilot project on stigma in epilepsy was awarded by the Fogarty Foundation (National Institutes of Health, USA) to a group of European experts under the leadership of prof. A. Jacoby, University of Liverpool. This project involved ethnographic studies to explore prevailing beliefs and attitudes to epilepsy in two developing countries, China and Vietnam. The project defined theoretical models of stigma and its link to disease burden, and validated, culturally specific measures of outcome were formulated for use in future intervention studies. Throughout its implementation, the project enhanced social science capacity in the participating countries and facilitated strong collaboration for future research. Aims and objectives -

To inform development of culturally appropriate approaches to reducing stigma and discrimination associated with epilepsy in the developing world.

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-

To develop a cross-culturally relevant theoretical model of stigma.

-

To develop culturally appropriate measures of stigma and discrimination, for use as outcome measures in future intervention programmes.

-

To enhance social science research capacity in China and Vietnam and develop strong collaborations for future research.

Methodology -

Comprehensive literature reviews

-

Rapid Appraisal studies in China and Vietnam

-

Detailed ethnographic studies

-

Development of a conceptual framework

-

Identification of assessment methods and outcomes for future educational campaigns

CREST team. Members include representatives from China, Vietnam, USA, UK, the Netherlands and Switzerland (WHO)

Results The Literature search aimed at identifying primary research or reviews on the effectiveness of stigma reduction strategies, including anti-stigma campaigns, educational intervention, attitude or behavioural change intervention. Out of 103 articles published between 1980 and 2005, 40 concerned mental illness related stigma, 19 with epilepsy, 12 with AIDS,12 with various pathological conditions (drug addiction, leprosy, obesity, diabetes etc.) and 21 discussed in general the illness-related stigma and the strategies suitable to fight it. The results of the literature search guided further developments of the project through ethnographic studies exploring the prevailing beliefs and attitudes to epilepsy in China and Viet Nam. Using in-depth interviews and focus groups data were gathered from people with epilepsy, their family members, their local communities and their general and specialised health care workers. The study findings provide insights into the dimensions of epilepsy stigma identifiable in these two countries, and highlight the similarities and differences in order to gain an understanding of: o

Ideas held about epilepsy (explanatory models of causation, treatment, prevention)

o

The impact of these ideas on attitudes towards having epilepsy

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o

Ideas and practices relating to its management as a health condition

o

Ideas and practices relating to its management as a potential source of stigma

The beliefs about causes, course and treatment of epilepsy and quality of life (QOL) impacts in key target groups were investigated, using ‘mini-ethnographies’ involving 141 in-depth interviews and 12 focus groups in China, and 84 in-depth interviews and 16 focus groups in Vietnam. Data were analysed thematically, using a qualitative data analysis package.

The team at work together with advisor Jerome Engel Jr.(left)

Training of interviewers in Viet Nam

By exploring meanings attached to epilepsy in these two cultural contexts, reasons behind previously documented negative attitudes have been clarified and foci for future intervention studies identified12. 5.4 The Atlas Project

Background Not much information exists regarding the resources available within countries to tackle the huge medical, social and economic burden caused by epilepsy. Lack of information about existing resources is a major impediment for policy-makers at local, national and international level for planning appropriate services for epilepsy care. In order to improve the availability of resources in the countries, accurate information about existing resources is crucial. This information is also helpful for health professionals and non-governmental organisations to advocate for more and better resources for epilepsy care. In order to fill the information gap about the resources available for the care of patients both with mental and neurological disorders, WHO launched the Project "Atlas" in 2000 aiming at collecting, compiling and disseminating information and data on the existing resources and services. The first document in the series was published in 2001 as the Atlas: mental health resources in the world , followed by the Atlas: country resources for neurological disorders in 2004. Because epilepsy care is one of the priority areas of WHO, in order to bridge the information gap in this area, it was decided to expand the Project "Atlas" into the area of epilepsy and to conduct a survey of country resources available for epilepsy care.

Objectives The objectives of the project were: •

Collect, compile and disseminate information on epilepsy resources

Analyse globally and regionally epilepsy resources data

Provide baseline for monitoring purposes over time

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Drive global and regional epilepsy programmes

Make the world more aware of deficiencies in epilepsy resources

Provide impetus for international efforts to enhance resources

. Methodology The first step was to identify specific areas where information related to resources and services for epilepsy care was lacking. In order to obtain this information, a questionnaire was developed in consultation with a group of WHO and ILAE/IBE consultants. The questionnaire was sent to the official delegates of all members of ILAE/IBE. In addition, WHO regional offices were asked to identify a key person working in the field of epilepsy in those countries where an ILAE/IBE liaison person was not available or not responsive. Completed questionnaires were received as follows: Table 5 Regions

Number of countries

Population wise

AFRO

38 (82,6%)

94,40%

AMRO

25 (71,4%)

97,20%

EMRO

15 (71,4%)

89,80%

EURO

45 (86,5%)

97,60%

SEARO

9 (81,8%)

98,50%

WPRO

23 (85,2%)

99,90%

Total

155 (80,7%) + 5 others

97,50%

. and four World Bank income categories Countries were grouped into the six WHO regions Results Data had been collected from 160 countries covering 97.5% of the world population through the afore mentioned questionnaire. In 2005 the Atlas on Epilepsy Care in the World was published. The information is presented in four broad sections: o

the disorder

o

the services

o

the care providers

o

the public health aspects.

The results are presented as global, regional and by income categories within each theme. Selected implications of the findings for further development of resources for epilepsy care are highlighted with each theme. The Atlas also includes brief reviews of selected topics summarizing historical, medical lifestyle, social and economic issues surrounding people with epilepsy.

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5.5 Development of Evidence-based Guidelines

Background Neonatal seizures are common. They can be caused by a variety of conditions, ranging from benign, selflimited illnesses to severe, life-threatening disorders. They are often the first sign of neurologic dysfunction in neonates, and may be used as one factor in considering long-term prognosis. An important mission of the International League Against Epilepsy (ILAE) is to improve the care of patients with epilepsy. As part of the Global Campaign Against Epilepsy, ILAE, in conjunction with the World Health Organization (WHO), established a new initiative to create clinical guidelines and diagnostic and management algorithms for the care of patients with seizures that can be applied worldwide, including in developing countries with limited or varied medical resources.

Aim To create clinical guidelines and diagnostic and management algorithms for the care of patients with seizures that can be applied worldwide, including in developing countries with limited or varied medical resources.

Methodology Guidelines for the treatment of neonatal seizures were drawn up in collaboration with the WHO Department of Child and Adolescent Health and Development. The WHO Collaborating Centre – Oasi Centre in Troina, Italy took the lead of the project. The guideline development followed the process recommended by WHO for the development of evidence-based guidelines.

Results A Proposal for an Algorithm for Diagnosis and Treatment of Neonatal Seizures in Developing Countries was created by an international panel of experts in seizure management and guideline development and published in Epilepsia in June 200713. The neonatal seizures guideline document proposes recommendations for the diagnosis and management of neonatal seizures.

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5.6 Project on the burden of epilepsy Background Global Burden of Disease (GBD) analysis provides a comprehensive and comparable assessment. The global burden of disease is assessed using the disability-adjusted life year (DALY), a time-based measure that combines years of life lost due to premature mortality and years of life lost due to time lived in states of less than full health. Mortality by cause of death was known with some precision only for the relatively small minority of the world’s population residing in countries with adequate vital statistics. Nowhere were estimates of disease incidence, prevalence, survival, and disabling sequellae consistently combined into population-level profiles of morbidity and mortality. The Global Burden of Disease, Injuries, and Risk Factors Study (1990) was the first major effort since the original GBD study to provide a complete systematic assessment of the data on all disease and injuries. Many new sources of data and methodological refinements in estimating disease burden have been developed since the original study. Within a new GBD project, comprehensive estimates of the burden of epilepsy, its disabling sequelae and its role as a risk factor for other diseases and injuries will be developed.

Aims The specific aims are to: 1. To generate comprehensive estimates of the burden of disease due to idiopathic epilepsy by age, sex, and region, for 1990 and 2005. Estimates will include deaths, years of life lost (YLL) and years lived with disability (YLD), incidence, prevalence and duration of cases and disabling sequalae. 2. To generate comprehensive estimates of the burden of disease due to epilepsy secondary to infections of the central nervous system (CNS), CNS cancers, strokes, and due to perinatal events. 3. To generate comprehensive estimates of the mortality and burden of disease due to epilepsy as a risk factor for road traffic injuries, burns, falls, drowning and suicide.

Methodology A systematic review was carried out to collect information on prevalence, incidence, mortality and treatment gap of epilepsy. This information was used within the GBD project to develop DALY, YLD and YLL estimates for epilepsy and were included in the Lancet publication from IHME.

Results The Institute for Health Metrics and Evaluation and other academic partners have collaborated on a new GBD 2010 study, published on 14 December 2012. This provides regional estimates of deaths and DALYs (using a new method for calculation of DALYs) for the years 1990, 2005 and 2010. It is anticipated that this will contribute to revisions for WHO global health estimates in 2013.

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GBD 2010 found that non-communicable diseases and disability caused a greater share of health loss in 2010 compared to 1990 in most regions of the world. At the same time, the study revealed that the leading causes of DALYs in sub-Saharan Africa have changed little over the past 20 years. Still, GBD 2010 provides evidence of encouraging progress in this region, such as reductions in mortality from malaria, HIV/AIDS, and maternal conditions. While GBD 2010 provides key information about health trends at global and regional levels, its tools also allow users to view data specific to 187 countries. Similar to the ways in which governments use financial data to monitor economic trends and make necessary adjustments to ensure continued growth, decisionmakers can use GBD data to inform health policy. Continual updates of GBD will incorporate the most recent data on disease patterns as well as the latest science about the effects of different risk factors on health. The Global Campaign Against Epilepsy, through ILAE, contributed to the above process .

5.7 Measuring the Impact of Campaign Activities at a national level

Background The GCAE had been on-going since 1997 and during that time many global, regional and local activities have been conducted within the framework of the Campaign. However the Campaign has also inspired and stimulated ILAE and IBE chapters and members to undertake their own national activities using the Campaign’s name, its eclipse logo and/or its “Out of the Shadows” slogan. Not all of these chapter/member based activities are well known outside the country or region where they have taken place. A survey was disseminated among IBE members to measure the impact of the Campaign.

Activity in Australia: Participation in Dragon boat race

Aims 

Quantify the scope and scale of all the Global Campaign related activity that has taken place at a national level.

Assess how the Campaign has been used, how well it has succeeded and how improvements may be made.

30


Methodology A survey was conducted to identify, classify and quantify activity undertaken at national/local level in support of, or on behalf of, the GCAE and to make a limited assessment about the impact of that activity.

Results 

96 ILAE chapters, 88 IBE full members and 20 IBE associate members in 111 countries were contacted by email with an English language questionnaire containing seven closed questions.

75 organisations from 60 countries responded to the survey: 51 organisations (68%) were IBE members; 24 (32%) were ILAE chapters.

16 organisations from 14 countries reported no activity. Inactivity was a consequence of a lack of understanding and awareness about how to access the Campaign. It was not the result of any antipathy toward the Campaign

Awareness raising for epilepsy as a Global Campaign activity in Pakistan

59 organisations in 48 countries reported some activity. 41% of the countries represented are European. The combined population represented by the 48 countries is 3.81 billion people, 56%

30 of the 48 countries (62%) are classified by the World Bank as high income or upper middle income countries. Only 8 (17%) are classified as low income countries and 10 as lower middle income countries

The types of activity carried out reflect the Campaign’s priorities. Public awareness and stigma reduction programmes were the most frequently reported activity.

Participation in the Campaign has grown steadily but has levelled off since 2005. However, 53 organisations (71%) in 41 countries (68%) reported they will be using the Campaign in the future regardless of whether or not they have used it in the past. Only 1 organisation said it would not be using the Campaign.

The most popular use of the Campaign is the slogan “Out of the Shadows”, used by 71% of actively involved organisations.

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

39 organisations (66%) reported their Campaign activity to be either very successful or moderately successful. Only 4 (7%) reported their activity was not very successful and only 1 (2%) reported no success at all.

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6.

Phase IV: 2009 – 2013

The newly elected presidents of ILAE and IBE, Solomon (Nico) Moshé and Mike Glynn, decided that, because the importance of the Global Campaign, they would lead the Campaign together, with Tarun Dua (representing WHO), thus forming the Campaign Secretariat. Hanneke de Boer would continue as Campaign Coordinator.

ILAE President Solomon (Nico) Moshé and IBE President President Mike Glynn

In order to build and expand on the success of the Campaign the Presidents set up a Global Campaign Taskforce. It became soon clear, however, that throughout the world there are many initiatives that could be interpreted as Global Outreach, for which there needs to be a raised awareness, but such activities would not necessarily be directed through the collaborative efforts of the GCAE. The Task Force was therefore renamed ‘Global Outreach’ with a primary aim of raising awareness of global educational and service initiatives in epilepsy throughout the world. This aside, the Global Campaign continued with the remit for which it was set up, as a joint initiative between ILAE/IBE and WHO.

6.1 Global Campaign Taskforce Taskforce members are representatives of their respective regions. Each member of the Taskforce was asked to appoint a young person from their respective countries to assist them with the work involved. Thus the Taskforce would also create an in-built mechanism for capacity building. One of the first charges of the Taskforce was the development of a strategic plan for the Campaign. Included in the plan should be: o

raising visibility of the Campaign, its activities and outcomes

o

development of one external harmonised message

o

strategies to work with governments to enhance epilepsy-related policies and programmes

o

recruitment of junior people from the regions to assist with the work of the Taskforce/Campaign

o

strategies to further address the treatment and knowledge gaps worldwide

o

an outline of priorities for research including epidemiological and quality of life research.

o

issues to be addressed in developed as well as developing countries

33


ILAE/IBE Global Campaign Taskforce – ILAE/IBE Global Outreach Taskforce Back row (from left to right): Anthony Zimba, Charles Begley, Emilio Perucca (ex-officio), Raidah Al Baradie, Solomon (Nico) Moshé, Sam Wiebe (ex-officio), Carlos Acevedo, Front row (from left to right): Mike Glynn (ex-officio), Tarun Dua (ex-officio), Helen Cross (Co-chair), Hanneke de Boer, Shichuo Li (Co-chair)

Also during this period a number of new activities started and others continued from Phase III into Phase IV.

6.2 Demonstration Projects (cont.) China – The final report on the “Demonstration Project: Epilepsy Management at Primary Health Level in rural China” was completed, published and launched in Beijing14.

As part of an epilepsy Demonstration Project (under the aegis of the Global Campaign Against Epilepsy), carried out in rural areas of six non-contiguous provinces of the People’s Republic of China, it was estimated that the number of people with epilepsy in China is almost 9 million with a treatment gap of 63%. The Demonstration Project was successful in implementing treatment and management of convulsive forms of epilepsy in rural areas of the country. Physicians with basic training were shown to be able to treat people with epilepsy. This cost-effective approach was successful in reducing the treatment gap by about 13%. Dr Hans Troedsson, WHO Representative WHO Country Office, China* The epilepsy project in China is an example of successful partnerships: in the first place, the partnership between IBE, ILAE and WHO, but more importantly the partnership with China’s Ministry of Health, national chapters and members of IBE, ILAE and other scientific societies, WHO regional and country offices, other NGOs and WHO Collaborating Centres. Mike Glynn, President, IBE Solomon L Moshé, President, ILAE Benedetto Saraceno, Director, Department of Mental Health and Substance Abuse, WHO* * Epilepsy Management at Primary Health Level in rural China: WHO/ILAE/IBE Demonstration Project: WHO China Office 2009

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Georgia – The Demonstration Project in Georgia was completed and led to a Symposium “Scaling Up Epilepsy Care in Georgia” followed by a workshop “Delivering Epilepsy Care through the Primary Health Care System” in Tbilisi, Georgia, in October 2011, marking the finalisation of the Project. Participants included: all principal investigators of the demonstration projects, ILAE/IBE presidents, WHO representatives (WHO Regional Advisor for Mental Health, Head WHO Country Office, representatives from WHO Headquarters, SEIN representatives (Chair Board of Directors), other collaborators in the GCAE as well as, the Dutch Ambassador, the

Workshop Georgia From left to right: Shichuo Li, Helen Cross, Minister of Health of Georgia , Otar Toidze and Natela Okujava

first Lady of Georgia and a number of Georgian politicians.

6.3 Initiation of new Demonstration Projects Ghana – Within the WHO mhGAP programme, in close collaboration with ILAE and IBE, a project has been initiated. A stakeholders meeting was held and a situational analysis is being drafted. Viet Nam – Again, within the WHO mhGAP programme, and in close collaboration with ILAE and IBE, a project has been initiated. A stakeholders meeting was held and a situational analysis is being drafted.

\ Stakeholders meetings in Accra, Ghana and Hanoi, Viet Nam

Cameroon – A stakeholders meeting has been heldand a protocol has been developed. Funds are being sought to implement this project. Due to the global economical crisis this has proven to be very difficult. India.- The feasibility of initiating a project in India is being investigated.

6.4 Regional Reports (cont.) Reports on the implementation of the GCAE, have now been published in all six WHO regions, the last two were published in 2010. The EMRO Regional Report on Epilepsy and the European Regional Report on Epilepsy were both launched during Regional Epilepsy Conferences in the presence of the respective WHO Regional Advisors on Mental Health. The reports aim at both lay and professional readers.

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They contain information on epilepsy, epidemiology, needs and resources, thus providing an overview of the epilepsy situation in the Regions. They address the current challenges faced in epilepsy care and offer recommendations to tackle them, as well as providing a panoramic view of the present epilepsy situation across the continents and conclude that many aspects of epilepsy care are seriously under-resourced.

6.5 Assessment of Country Needs and Resources on Epilepsy

Background Goal 3 of the Strategic Plan of the Global Outreach Taskforce reads”: Assess and strengthen health care systems analysis for epilepsy by acquiring a better understanding of the conceptual model, magnitude and scope of the coverage gap including the treatment and knowledge gap (definition), measuring the burden of epilepsy and methods for conducting country resource assessments. In early 2011, it was decided to conduct a needs and resource assessment specific to epilepsy in Tajikistan in collaboration with the WHO European Regional Office, and WHO Country Office Tajikistan. AimTo complete a resource assessment and treatment gap analysis in Tajikistan.

Methodology The first step in this project was to create a standardized data collection instrument specific for epilepsy, building on other related tools and reports, such as the data collection survey used for the WHO Epilepsy Atlas 2005, the WHO tool for mental health systems (WHO_AIMS 2.2), GCAE’s “A Questionnaire on People with Epilepsy: Legislation and Human Rights” and the World Federation of Neurology Survey on Neurology Education and Training. The instrument development process involved identification of eight domains to be addressed, deciding on the areas that would be evaluated within each domain, and finally creation of specific indicators and associated questions pertaining to each area. When identifying the domains, a health systems evaluation framework connecting structural, process, and outcome factors was superimposed on the WHO-AIMS framework.

Results The resource assessment and treatment gap analysis in Tajikistan have been developed and is being finalized for publication as a scientific article. A final report was produced including the findings of this project. It was reported that there is very little specific knowledge about the social and economic burden

36


of epilepsy in Tajikistan or the resources and services available to meet the needs of people living with epilepsy. There appears to be widespread discrimination as far as employment and provision of services are concerned, and substantial stigma in the general population. There also appears to be severe shortages of affordable services for people living with epilepsy, particularly outside the major cities. The purpose of this report was to provide a baseline assessment of the resource availability and access issues with regard to diagnosis and treatment of epilepsy and create the momentum for more detailed studies of treatment gaps and subsequent actions to reduce these gaps.

6.6 Project on Legislation and Epilepsy (cont.) The two documents resulting from this project, the Basic Principles for Epilepsy Legislation (setting out basic principles and rights that should be considered when drafting legislation related to epilepsy) and the Guidance Instrument for developing, adopting and implementing epilepsy legislation were finalised and produced on a CD-Rom.

6.7 Development of Evidence-based Guidelines (cont.) Following the development and publication of the proposal of an algorithm on neonatal seizures (see 5.5), evidence based guidelines for the management of neonatal seizures were developed. These guidelines will be of use for neo-natologists, paediatric neurologists, paediatricians, general practitioners, nurse practitioners, nurses and other health professionals who may be in contact with infants experiencing seizures within the first 28 days of life (age up to 44 weeks post-conception). The Guidelines were published in 201115.

6.8 Project on the Global Burden of Disease (cont.) Within the new WHO Global Burden of Disease project, comprehensive estimates of the burden of epilepsy, its disabling sequelae and their role as a risk factor for other diseases and injuries are being developed. The Global Campaign Against Epilepsy, through participation of ILAE, contributed to this project.

Results The Institute for Health Metrics and Evaluation and other academic partners have collaborated on a new GBD 2010 study, published on 14 December 2012, which provides regional estimates of deaths and DALYs (using a new method for calculation of DALYs) for the years 1990, 2005 and 2010. It is anticipated that this will contribute to revisions for WHO global health estimates in 2013.

37


6.9 Regional Stakeholders meetings

Background Regional Stakeholders meetings were organised with the participation of the WHO Regional Advisors for Mental Health, the leadership of ILAE and IBE and regional stakeholders.

Aim To discuss on-going and future Campaign activities in the respective Regions.

Methodology The meetings were organised during or preceding Regional Conferences, thus keeping the costs low and enabling many representatives from many countries in each region to participate. The agenda’s for each meeting were similar and would include: -

Presentation on the general history and progress of the GCAE worldwide

-

Activities in the Region

-

Activities in countries

-

Comments from the WHO Regional Advisor

-

Needs in the Regions and Recommendations

Recommendations from these meetings can be found in Appendix V..

Launch of the Strategic Plan for Epilepsy for the Americas in Honduras

38


Results Between 2010 and 2012 such meetings were organised in all regions (AFRO, AMRO, EMRO, EURO and SEARO/WPRO. A major outcome has been the development of a strategic plan for epilepsy in the Americas. This has been approved by the regional leadership of AMRO/PAHO which involves all Ministers of Health of all the member states and will include epilepsy as a health priority for the next 10 years. All countries in the region will be committed to develop, based on the national realities, a national plan for epilepsy and to submit an annual progress report to WHO/PAHO. This document may be a model which can be used in the other regions of the world. The entire process was initiated under the auspices of the Global Campaign Against Epilepsy.

Quito, Ecuador* It was an unprecedented moment in the history of the fight against epilepsy in the Americas. On November 14th, 2012, the Pan American Health Organization (PAHO/WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) signed a Memorandum of Understanding that bonds them in a 10-year-long partnership to deploy the Strategy and Plan of Action on Epilepsy for the American continent. “It is a constructive and fraternal alliance”, said Dr. Jorge Rodriguez, PAHO’s Senior Advisor on Mental Health, during the ceremony, held in the Hilton Colón Hotel, in Quito, Ecuador, in the opening session of the VII Latin American Congress on Epilepsy. The newly-established alliance is the first PAHO/WHO forms in its 110 years of existence. “I believe that we haven’t yet realized the importance of this moment”, commented the Secretary General of the ILAE, Dr. Carlos Acevedo. The Strategic Plan was unanimously approved in 2011 by PAHO/WHO’s Directive Council. It aims to render epilepsy a priority disease. It means all countries of the continent will have 10 years to include epilepsy in their health priority agenda. “The Strategic Plan is a mandatory document and these states have to follow it”, Dr. Rodriguez said. Apart from including epilepsy in the national health agenda and providing funding, the governments will have to present reports to PAHO/WHO twice a year about the advancements in the field. Patrícia Tambourgi Journalist and International Relations Analyst, Brazil

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7. Appendices Appendix I

PAPER TO CABINET To: From: Date: Topic:

Cabinet Executive Director, Social Change and Mental Health 03 December 1999 GLOBAL CAMPAIGN: BRINGING EPILEPSY OUT OF THE SHADOWS

Background a) Impact on health  Epilepsy is one of the most common serious brain disorders worldwide and it imposes a large economic burden on health care systems. Epilepsy is universal, with no age, racial, social class, national nor geographic boundaries.  There are 40-50 million sufferers in the world today, 85% of whom live in developing countries (Fig. 1, Annex 1). An estimated two million new cases occur each year globally. At least 50% of cases begin at childhood or adolescence (Fig. 2, Annex 1).  Epilepsy has serious physical, psychological and social consequences. Epilepsy has a significant mortality (four times the expected rate in young adults). There is a hidden burden associated with stigma and discrimination in the community, work place, school and home.  70 to 80% of people with epilepsy could lead normal lives if properly treated. However, in developing countries 60 to 90% of people with epilepsy receive no treatment due to inadequacies in health care resources and delivery, and due to social stigma. b) Existing activities In 1997 three international organizations, the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) joined forces to initiate a Global Campaign Against Epilepsy (GCAE).

On initial stage the strategy of the campaign was essentially focused on advocacy and awareness activities: -

In 1998 at a meeting in Heidelberg sponsored by the German Government, the European Declaration on Epilepsy was unanimously adopted (Annex 2); - In 1998 and the first half of 1999, twenty-seven countries have joined or are planning to join the Global Campaign Against Epilepsy. Experience of initial stage of the campaign created rational for suggestion of a second stage of the GCAE with a new and more ambitious goal: to improve health care services, treatment, prevention, and social acceptance of epilepsy worldwide. A Consultative Meeting on Epilepsy held in WHO/HQ in April 1999 with participation of representatives from IBE, ILAE, WHO Regional Advisers and experts recommended to boost the Campaign and to proceed with demonstration project on epilepsy within the GCAE frame (Meeting Report: MNH/NND/99.3). This project would have to work as part of a country's current health system in order to ensure that epilepsy interventions would be sustainable and able to provide appropriate care over long term including availability of essential antiepileptic drugs. Strategy and Proposal The strategy of the GCAE includes two parallel and simultaneous tracks: 1) raising of general awareness and understanding of epilepsy, and 2) supporting Departments of Health in identifying needs and promoting education, training, treatment, services, research and prevention nationally. 1. To provide a platform for general awareness on epilepsy, the following is proposed: - to intensify and boost the Campaign in the year 2000 with the participation of the Director-General of WHO, WHO Regional Directors and Presidents of relevant NGOs; - to announce a Global Awareness Day for Epilepsy; and - to organize regional conferences on public health aspects of epilepsy in the six WHO Regions, including a Declaration on Epilepsy, based on the European model. 2. To assist Departments of Health in the development of national programmes on epilepsy, the following was proposed: - to provide information and support for national initiatives under the GCAE; and

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-

to initiate demonstration project in China (WPRO), Honduras (AMRO), Jamaica (AMRO), vi Panama (AMRO), Senegal (AFRO), and Zimbabwe (AFRO) . The objectives of the demonstration projects are: - to reduce the treatment gap and the physical and social morbidity of people suffering from epilepsy by intervention at a community level; - to train and educate health professionals; - to dispel stigma and promote a positive attitude to people with epilepsy in the community; - to identify and assess the potential for prevention of epilepsy; - to develop a model for promotion of epilepsy control worldwide and for its integration in the health systems of participating countries. Evaluation criteria: Reduction in treatment gap, change in public attitudes, potential for prevention. Duration: 4 to 5 years. Partners Within the framework of the GCAE, WHO has already established a good working relationship with the professional (ILAE) and lay (IBE) NGOs for epilepsy. The Regional Offices of AFRO, EURO and AMRO are actively involved. Partnerships are being developed among organizations of the United Nations system, nongovernmental organizations, WHO collaborating centres, the private sector, academic and research groups, Foundations and donors. The following WHO departments have already expressed support: Department of Child and Adolescent Health Development, Department of Resource Mobilization and Office of Press and Public Relations. Contacts are being established with the clusters of Communicable Diseases, Non-Communicable Diseases and Department of Essential Drugs and Other Medicines in the cluster of Health Technology and Pharmaceuticals. A proposal to approach the pharmaceutical industry for financial support was considered by the Committee on Private Sector Collaboration (CPSC). A copy of this decision is attached as Annex 3. All the neuroscience NGOs including the World Federation of Neurology and the International Child Neurology Association support the Global Campaign Against Epilepsy. Recommendations 1. In the year 2000 to intensify and boost the GCAE and announce a Global Awareness Day for epilepsy in the presence of the Director-General, Executive Director as well as the Presidents of the participating NGOs. Regional offices will replicate similar high visibility events in all Regions, in the presence of Regional Directors, NGOs and media-attracting personalities. 2. In 2000 initiate the development of demonstration project as model for the reduction of treatment gap and stigma, improvement in education, training and health care delivery, and promotion of prevention. 3. During the period 2000-2004 hold regional conferences on public health aspects of epilepsy, including a Declaration on Epilepsy as a basis for regional political action. 4. Within the next six months organize a meeting with appropriate United Nations agencies and representatives of the pharmaceutical industry to explore the possibility of furthering collaboration and mobilizing resources for the campaign in accordance with the WHO Guidelines on Interaction with Commercial Enterprises and the aforesaid decision of the CPSC.

vi

Criteria for country selection in project are: willingness to participate, political contacts, availability of key WHO Collaborating Centre or country representative, IBE/ILAE /other epilepsy organizations, existence of basic primary health care infrastructure, regular and basic AED supply, facility of communication.

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Appendix II: Regional Declarations.

African Declaration on Epilepsy DAKAR - 06 May 2000

Under the aegis of the Global Campaign Against Epilepsy of the World Health Organization (WHO), International League against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE), a meeting "Epilepsy : A Healthcare priority in Africa" was held in Dakar, Senegal, Africa on 5 and 6 May 2000. Professionals from Health and Social Sciences sectors and representatives from universities coming from every African Region unanimously agreed to the following Declaration:

CONSIDERING THAT :  epilepsy is the most common serious chronic brain disorder, estimated to affect at least 50 million people in the world of which 10 million live in Africa alone, irrespective of race, religion, sex, age or socio-economic groups,  epilepsy is not an infectious disease and seizures are not contagious,  all people with epilepsy can be effectively and inexpensively treated,  ¾ of people with epilepsy in Africa have no access to healthcare provisions and are not appropriately treated,  general information about epilepsy, trained expertise, diagnostic facilities, antiepileptic drugs and surgery are not available to - or affordable by - the majority of people with epilepsy, for geographic, financial or cultural reasons,  beliefs in supernatural causes and traditional treatment of epilepsy in Africa contribute to the under-utilization of the medical health services, to discrimination and social isolation,  because of these factors, disability and mortality are greater in Africa than elsewhere,  epilepsy has serious physical, psychological and social consequences for the afflicted and their families,  the impact of epilepsy is most severe in children and adolescents,  in Africa preventable causes of epilepsy are more frequent than elsewhere, including infectious diseases, head trauma, insufficient perinatal care and consanguinity,  epilepsy does not receive adequate attention in existing national health plans,

WE PROCLAIM THE FOLLOWING : Epilepsy is a healthcare priority in Africa requiring every government to develop a national plan to:  address the needs with respect to epilepsy in terms of access to trained personnel, modern diagnostic equipment, antiepileptic medication and surgical treatment, information communication, prevention and social integration,  educate and train health care and other relevant professionals about epilepsy,

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 educate those affected by epilepsy and the general public about epilepsy as a universal neurological, non-communicable and treatable condition,  eliminate discrimination in all spheres of life, particularly at school and the work place,  encourage incorporation of prevention and treatment of epilepsy in national plans for other relevant healthcare issues such as maternal and child health, mental health, infections, head trauma, neurovascular diseases and community based rehabilitation programs,  encourage the public and private sectors and NGO's to get involved in the local activities of the Global Campaign against Epilepsy,  promote interaction with traditional health systems,  encourage basic and applied research on epilepsy,  proclaim a National Epilepsy Day,  encourage regional and continental co-operation.

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Latin American Declaration on Epilepsy SANTIAGO DE CHILE - 9 September 2000

Under the aegis of the Global Campaign Against Epilepsy, the Commissions on Latin American Affairs of the International League against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), the Pan American Health Organisation/ World Health Organisation (PAHO/ WHO), UNICEF for Latin America and the Caribbean, the Regional Office on Education for Latin America and the Caribbean of UNESCO, the Ministry of Health of Chile, organisations of people with epilepsy and parents of children with epilepsy, and the delegates of the national Leagues against Epilepsy of the Latin American and other countries of the world, on September 9th of 2000, at Santiago de Chile, unanimously declare: 

Epilepsy is a neurological disorder that, if inadequately treated, produces severe physical, psychological, social and economic problems, which are aggravated by poverty in all Latin American countries.

At least five million people in Latin America, probably more, have epilepsy, and more than three million do not receive treatment.

Epilepsy may occur at any age, mainly in childhood and adolescence, but is also frequent in the elderly.

Lack of adequate detection and treatment worsens the prognosis including the social and economic impact.

Mortality in people with epilepsy is higher than in the general population.

With appropriate treatment, most people with epilepsy may be relieved of their seizures and enjoy a significantly improved quality of life.

Direct and indirect costs of epilepsy in Latin America are high and can be reduced by effective treatment.

We call on the Latin American Governments, national and regional, public and private organisations, all health care providers and the general public to join us in taking strong and decisive action to meet the objectives of the Global Campaign Against Epilepsy of the PAHO/WHO-ILAE-IBE “Epilepsy: Out of the Shadows”.

Specifically we urge action to: 

Improve public understanding of epilepsy and thereby reduce its stigma.

Fight discrimination against people with epilepsy in all social environments, especially in the school and at the workplace.

Educate people with epilepsy and their families to improve their understanding of their condition and to empower them to seek appropriate treatment and lead fulfilled lives.

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Strengthen primary health care, emphasising prevention, diagnosis and treatment by training the professionals working on this level.

Ensure availability of modern equipment, trained health personnel, access to the full range of antiepileptic drugs, epilepsy surgery and other forms of treatment.

Promote research and education in epilepsy.

Promote close liaison of governments, health and social authorities with ILAE, IBE and PAHO/WHO to develop strategic projects and mobilise resources for the control of epilepsy.

Develop national plans for epilepsy in all Latin American countries.

Support publication of a detailed public health assessment on epilepsy in Latin America.

Promote national and international legislation, which facilitates the implementation of health policies in accord with the initiatives, which are proposed in this declaration.

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North American Declaration on Epilepsy LOS ANGELES - 01 December 2000 At a meeting in Los Angeles on December 1, 2000, leaders of North American professional and lay bodies, WHO representatives and health experts from governments and universities unanimously adopted the following declaration: 

Approximately four million people in North America have epilepsy. In many cases, it is a life-long condition.

People with epilepsy have an increased risk of serious injury and death. Their chance of dying is three times higher than people without seizures.

Uncontrolled epilepsy can lead to severe adverse social, psychological, and economic consequences.

Uncontrolled epilepsy in childhood can lead to permanent brain damage and learning impairment.

Seizure disorders are becoming an increasing cause of disability among the elderly.

The incidence of epilepsy is increased in socioeconomically disadvantaged groups.

The cost of epilepsy, at least 12.5 billion dollars per year in the USA alone, could be reduced substantially with effective action.

Epilepsy can be controlled in many people with currently available treatment; however, a large number continue to have seizures despite optimal therapy.

Better epilepsy treatment could permit more people to realize their full potential, with economic benefits for the community as well as for themselves.

Neuroscience research promises further advances in patient care and, for the first time, offers the possibility of a cure for epilepsy.

Yet, 

Too often, patients and health care providers believe that seizures cannot be fully controlled and that patients must ‘live with them.’

Funding for research on epilepsy is lower on a per capita basis than that devoted to many other less common and less burdensome disorders.

People with epilepsy in North America have unequal access to necessary care. Socioeconomically deprived groups such as inhabitants of inner cities, and indigenous peoples are particularly neglected.

We call on governments, private organizations, care providers and other concerned individuals: 

To provide uniform access to optimal care, including specialized centers and surgery where medically indicated.

To improve training in epilepsy for specialists, primary care physicians and other health workers.

To ensure that people with epilepsy and their families are fully informed about the disorder.

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To educate teachers, employers, and the general public about epilepsy, in order to reduce stigma and prejudice.

To promote the collection, analysis, and interpretation of data necessary to implement and evaluate public health programs related to epilepsy.

To increase basic and clinical research funding for epilepsy.

To take advantage of recent advances in neuroscience to prevent, treat, and ultimately cure epilepsy.

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Eastern Mediterranean Declaration on Epilepsy CAIRO - 04 March, 2003

Under the aegis of the Global Campaign Against Epilepsy of the World Health Organization (WHO), International League against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE), a meeting "Epilepsy as A Public Health Concern in the Eastern Mediterranean Region" was held in Cairo, Egypt, on 3 and 4 March 2003. Professionals from Health and Social Sciences sectors and representatives from universities coming from the member states of the Eastern Mediterranean Region unanimously agreed to the following Declaration: CONSIDERING THAT: - epilepsy is the most common serious chronic brain disorder, estimated to affect at least 50 million people in the world of which at least 4 million live in the Eastern Mediterranean Region, - contrary to many misconceptions, epilepsy is a brain disorder with natural causes and requiring medical treatment, - it is often not realised that epilepsy is treatable, and that most people with epilepsy can lead productive lives as a result of relatively inexpensive, cost-effective treatment, - in parts of the Eastern Mediterranean Region many people, especially in rural areas, have no access to appropriate healthcare provisions and treatment, - general information about epilepsy, trained expertise, diagnostic facilities, antiepileptic drugs and surgery are not available for or affordable by many people with epilepsy, for geographic, financial, cultural or communication reasons, - epilepsy has serious physical, psychological and social consequences for the afflicted and their families, - the impact of epilepsy is most severe in children and adolescents, - epilepsy does not receive adequate attention in existing national health plans in many countries, We call on the governments of the member states of the Eastern Mediterranean Region, national and regional, public and private organisations, all health care providers, and the general public to join us in taking strong and decisive action to meet the objectives of the Global Campaign Against Epilepsy of the WHO/ILAE/IBE “Epilepsy: Out of the Shadows”. Specifically we urge action to: 

address the needs with respect to epilepsy in terms of prevention, access to trained personnel, modern diagnostic equipment, antiepileptic medication, surgical treatment where necessary, and social integration,

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include antiepileptic drugs in the list of essential drugs in all countries, and make them constantly available to avoid the serious consequences of treatment interruptions,

educate and train health care and other relevant professionals and volunteers on all levels of health care about epilepsy,

educate those affected by epilepsy, their families and the general public about epilepsy as a universal neurological condition, to eradicate misconceptions, and empower the affected to seek appropriate treatment and improve their quality of life,

eliminate discrimination in all spheres of life, particularly concerning school and employment,

encourage the public and private sectors and NGO's to get involved in the local activities of the Global Campaign against Epilepsy,

encourage basic and applied research on epilepsy as an integral part of epilepsy services on all levels,

proclaim a National Epilepsy Day,

encourage regional and international co-operation.

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European Declaration on Epilepsy HEIDELBERG - 25 October 1998

At a meeting in Heidelberg, Germany on 25 October 1998, over 100 leaders of European professional and lay bodies, WHO representatives and health experts from governments and universities unanimously agreed the following declaration: 

Six million people in Europe currently have epilepsy. Fifteen million will have epilepsy at some time of their lives.

Epilepsy has profound physical, psychological, and social consequences

Children, adolescents and the elderly are especially afflicted by non-detection and undertreatment.

With appropriate treatment over three quarters of people with epilepsy could lead normal lives free of seizures.

Epilepsy costs the countries of Europe over 20 billion ECU every year, an amount that could be significantly reduced with effective action.

We call on the governments of Europe, the European Union, and all health care providers to join us in taking strong and decisive action to meet the objectives of the Global Campaign against Epilepsy launched by the WHO, ILAE, and IBE. Specifically, we urge action: 

to improve public understanding of epilepsy and thereby reduce its stigma

to remove discrimination against people with epilepsy in the workplace

to help people with epilepsy to understand their condition and to empower them to seek appropriate treatment and lead fulfilled lives

to improve the knowledge of health care professionals and other professionals about epilepsy, before and after graduation

to ensure the availability of modern equipment, facilities, trained personnel and the full range of antiepileptic drugs, so that an accurate diagnosis can be made leading to the most effective treatment

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to encourage research on epilepsy and its management

to encourage close liaison among governments, health and social authorities and agencies, and the national chapters of the ILAE and IBE

to support the publication of a ”white paper“ as a detailed Public Health statement on Epilepsy in Europe

to provide practical assistance for countries with underdeveloped epilepsy services within and beyond Europe.

Background Note Epilepsy is the commonest serious brain disorder in every country, and probably the most universal of all medical disorders. It occurs at all ages, especially in childhood and old age, and in all races and social classes. At least 40 million people world-wide have epilepsy. One hundred million people will have epilepsy at some time in their lives. Epilepsy is widely misunderstood, leading to fear, secrecy, stigmatisation, and the risk of social and legal penalties. In some European countries it is still not recognised as a brain disorder and up to 40% of people with epilepsy may be untreated – the treatment gap. The life span of people with epilepsy is reduced. Indeed, in specific risk groups the mortality may be twice or more that of the general population. The ILAE has published a document on ”Appropriate standards of epilepsy care across Europe“. However, professionals treating people with epilepsy often do not have sufficient specialised knowledge about the condition. In some countries, antiepileptic drugs are not always available or are unaffordable. In a number of European countries diagnostic facilities are lacking or inadequate. Although WHO and World Bank studies have shown that epilepsy is a considerable economic burden, very few European countries have national plans for epilepsy. Epilepsy has profound physical, psychological, and social consequences: Many children with epilepsy receive inadequate schooling. The rate of unemployment is disproportionately high for people with epilepsy mainly due to the ignorance of employers. It is two to three times greater than the general rate, and more than for people with other disabilities.

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Many people hide their condition. This contributes to social isolation, low self esteem, and can lead to helplessness and depression. Many people with epilepsy lack knowledge about their condition. Women with epilepsy often have inadequate information about pregnancy and child-bearing. The quality of life in elderly people is often impaired due to unrecognised epilepsy. Many people with epilepsy have a severe problem with independent mobility. The objectives of the Global Campaign Against Epilepsy of the World Health Organization, the International League Against Epilepsy, and the International Bureau for Epilepsy are: 

to increase public and professional awareness of epilepsy as a universal, treatable brain disorder

to raise epilepsy to a new plane of acceptability in the public domain

to promote public and professional education about epilepsy

to identify the needs of people with epilepsy on a national and regional basis

to encourage governments and departments of health to address the needs of people with epilepsy including awareness, education, diagnosis, treatment, care, services, and prevention.

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Asian - Oceanian Declaration on Epilepsy NEW DELHI – 13 November, 2000 A meeting "Epilepsy: A Public Health Priority in Asian & Oceanian Region" was held in New Delhi on November 10, 2000.

Over 600 professionals from health and social sciences sectors and

representatives from many other organisations of the region unanimously agreed on November 13, 2000 to the following declaration:

CONSIDERING THAT IN ASIA/OCEANIA: 

At least 30 million people have the common brain disorder - epilepsy. This compares with

approximately 50 million people with epilepsy world-wide. 

Epilepsy can have serious medical, psychological, social and economic consequences for

people with epilepsy and their families. 

Epilepsy affects people with epilepsy and their families irrespective of race, religion, gender, age

or socioeconomic status. 

Although epilepsy is a brain disorder, it is often mistakenly believed to be a mental illness, or to

be caused by supernatural powers. 

It is erroneously, yet widely, believed that epilepsy is an infectious disease and seizures are

contagious. 

It is often not realised that epilepsy is treatable, and that most people with epilepsy can lead

productive lives as a result of relatively 

inexpensive, cost-effective treatment.

The majority of people with epilepsy are treated inadequately and inappropriately because of

ignorance, discrimination and limited health resources. 

Good quality standard anti-epileptic drugs are not regularly available in many countries.

Disability and mortality are greater because epilepsy is inadequately treated.

Epilepsy impacts most severely on the period of greatest development, namely childhood,

adolescence and young adulthood. Yet it is during this time of life that it is most readily and successfully treated. 

The preventable causes of epilepsy such as poor perinatal care, infectious diseases, parasitic

infestations, head trauma and consanguineous marriages are particularly prevalent. 

Epilepsy has not been included in most National Health Care plans.

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PROCLAMATION We call on the governments and other health providers of the Asian and Oceanian region, to join us in taking strong and decisive action to meet the objectives of the Global Campaign Against Epilepsy launched by the World Health Organization (WHO), the International League Against Epilepsy ([LAE) and the International Bureau for Epilepsy (IBE).

Specifically, we urge every government in this region to: 

Educate people with epilepsy, their families and the general public about epilepsy as a widespread, non-communicable and treatable chronic brain disorder.

Educational means

appropriate to all levels of literacy should be used. 

Educate and train health care and other relevant professionals about epilepsy, its prevention and its treatment.

Provide access to trained personnel, modern diagnostic equipment and appropriate medication and/or surgical treatment for epilepsy.

Promote and support research in Asia and Oceania into the basic processes, clinical aspects, and psycho-social consequences of epilepsy.

Promote social integration and eliminate discrimination against people with epilepsy in all spheres of life, especially school, work and marriage.

Include epilepsy in their national health plans, just as they do maternal and child health, mental health, infections and immunisation.

Encourage cooperation between modern medical, traditional and other healing systems for the treatment of epilepsy.

Encourage the public and private sectors, as well as relevant Non-Governmental Organizations to actively support local activities related to the Global Campaign Against Epilepsy.

Raise public awareness of epilepsy by proclaiming a National Epilepsy Day, and supporting the establishment of a World Epilepsy Day.

Encourage regional and global cooperation in dealing with epilepsy.

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Appendix III: Demonstration Projects

AFRO REGION Senegal: Situational analysis Senegal is a West-African country that covers a territory of 69,700 km² and its population is 10 million. Of the population 45% are less than 15 years of age, 54% is female and 55% live in the rural areas. The health system is structured as a pyramid, constituted from the base to the top by: health posts (villages and rural community), health centres (cities), regional hospitals and (2) university hospitals. There is a wide disparity of medical personnel: 90% of specialised doctors are concentrated in Dakar. The Dakar region harbours more than 50% of the MD’s, pharmacies, nurses and midwives. The mean national prevalence rate of epilepsy in Senegal is estimated to be 8,3%. Different epidemiological research projects have emphasised the important differences from one region to another . In the suburban area Pikine, characterised by promiscuity and problems of hygiene and water supply, the prevalence raises to 12%. The Pikine Health District is a poor suburb of Dakar with a population of 480,000 of whom 57% younger than 20 years of age. Pikine is a conglomerate of traditional villages, resettlement houses and squatters’ homes. Some limited primary maternal and infant health plans exist.

Overall aims 

to decrease the treatment gap

to develop a model of epilepsy care in terms of identification, treatment, prevention, education, training and research

Specific aims 

to evaluate the knowledge, attitude and practice about epilepsy

to assess local cultural believes and health seeking strategies

to develop epilepsy training modules

to strengthen health personnel capacity to detect and manage epilepsy

to ameliorate access and availability of antiepileptic drugs

to assess current management practices and promote its improvement

to improve the prevention f epilepsy

to ameliorate epilepsy knowledge and required attitudes of teachers

to ascertain education on epilepsy to patients and their families

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to promote general awareness about epilepsy and fight the stigma surrounding the condition

to set up local support groups

to reduce the social, economic and professional burden faced by people with epilepsy

Methodology Epidemiological survey A multi-disciplinary and multi-dimensional approach was used to establish services for epilepsy and ensuring that they would be integrated in the national health service. The strategy consisted of: 

preparation phase

national intervention

pilot intervention studies

This Demonstration Project consisted of a survey of people with epilepsy in the project site. This was followed by training and educational interventions. Finally a second survey to evaluate their expected impacts on awareness, treatment gap, knowledge and services was performed.. Public education The interventions consisted of the distribution of training materials for health professionals, patient leaflets and information for the general public .A television documentary and advertising message were developed with the participation of the First lady, the Ministry of Health, the National wrestling Champion and a Music Celebrity and finally weekly broadcasting on epilepsy. A Drug Bank providing Phenobarbital was set up, Training Seminars were organized for: 

Primary school Teachers

Alumni from 5 primary and 2 secondary schools

Doctors and health personnel from public and private enterprises

Raising public awareness in Senegal

Later weekly specialised consultations for epilepsy were organized.

Organizational Context and Management Structure The Ministry of Health had been instructed by the Prime Minister of the country to initiate a Demonstration Project.. A co-ordination team was set up consisting of: the Director of Health of the Ministry of Health, and the Executive Board of the Senegalese League. Against Epilepsy (SLAE). Training, research and care activities were co-ordinated by the SLAE Research and Training Commission. Education, information and social activities were managed by the SLAE Socio-Educative

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Commission. The project was supported by the Service of Health Education of the Ministries of Health and of Social Affairs, Woman and Child. The Project was facilitated and monitored on behalf of the Global Campaign Secretariat by Prof. Ley Sander, the scientific project leader of the Campaign, and Prof. Harry Meinardi. The project was facilitated and monitored by members of the Campaign Secretariat (Dr. Leonid Prilipko and Hanneke M. de Boer).

Conclusions The Demonstration Project in Pikine revealed that the public health methodology applied was effective despite the difficulties related to the context and could be extended to the rest of Senegal and proposed as a model to adapt to the other countries of the Region, taking into account every local specificity.

Zimbabwe Situational analysis Zimbabwe is a landlocked country in Southern Africa, it measures 391.000 km2 and its population is 3 million (source: CIA). The country shares borders with Zambia . The white population is estimated to be around 40.000. The official language is English, however, the majority of the population speak Shona or Ndebele. Just over 50% of the population are in the economic active group of 15-64 years old, while 40% were under the age of 15. The life time expectancy is 40 years (estimates vary from 37-44). Despite large mineral and agriculture resources, the country’s economy has suffered in recent years from political instability, involvement in the war in the Democratic Republic of Congo, the AIDS pandemic (30% of the ante-natal clinic attendees had been shown to be HIV positive) and from the outside economic pressures of multilateral organisations, such as the World Bank and the International Monetary Fund. Inflation rose from an annual rate of 32% in 1998 to 500% in 1999. The prevalence of epilepsy in Zimbabwe at the time of the Demonstration Project was unknown. In 1970 Levy et al reported a prevalence rate of 7.4/1000 based on a community-based survey of 17 000 rural inhabitants16, but more recent studies in other African countries report on average prevalence rates of 15/1000. The Hwedza District is a rural area that measures 2.560 km2 and has a population of 90.350. At the time of the Demonstration Project the health infrastructure counted one mission hospital, one rural hospital, 4 government rural health centres and 5 district council clinics. There were 2 doctors until 2003, during that year and in 2004 there were no doctors. There was a well developed primary health care structure with 5-10 state registered nurses, a similar number of certified nurses and 9

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Environmental Health Technicians (one at each of the afore mentioned hospitals, rural centres and clinics). In the year 2000, before the project was initiated, there were 489 patient contacts for epilepsy (multiple contacts per patient, but these were not registered by name), 4 new patients were registered that year. Thus a prevalence of 0.45/1.000 and incidence of 4.4/1.000 was indicated. It was likely that a significant treatment gap (of around 90%) existed.

Overall aims To demonstrate that it is possible to improve the quality of life of people with epilepsy in rural Zimbabwe by:  Discerning the prevalence of epilepsy and its treatment gap in a rural area.  Discerning the influence of epilepsy on the quality of life of people with epilepsy in such an area.  Positively influencing the physical quality of life of these people with epilepsy through a pharmaco-economic intervention (ensuring availability and accessibly of medical care and medications).  Positively influencing the social quality of life of these people with epilepsy through a psychosocial intervention (a health education campaign for health staff, patients and their families, and the public).

Methodology The project consists of three phases: 1.

Epidemiological Survey

2.

Intervention to Improve Treatment

3.

Education

1. Epidemiological Survey

Visit to Demonstration Project site Left to right: Harry Meinardi, Jens Mielke (Principal Investigator), Leonid Prilipko

The questionnaire that was used for the prevalence survey was based on that used in the demonstration project for China. People identified to have possible epilepsy were evaluated by Primary Health Care Workers at the local clinics and given a confirmatory diagnosis if appropriate. One of the principal investigators randomly reviewed a sample of those found to have epilepsy by the Primary Health Care Worker, as a quality assurance. A rural community prevalence for epilepsy of 13.3/1.000 was found, which is similar to other African countries. A treatment gap of 93% confirmed clinical impressions. The vast majority of people with epilepsy in the district were not receiving treatment.

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2. Intervention to Improve Treatment People found to have epilepsy were asked to fill out a questionnaire about their quality of life. In addition interviews with people with epilepsy and their caregivers were conducted to correlate with the questionnaire results, and two focus group discussions were held.

Table 3: Results: Population Hwedza Randomly sampled Screened as possible epilepsy

90 350 6274 636

Screened as positive for epilepsy Prevalence Expected number of people with epilepsy in district (using p prevalence 13.39/1000)

84 84/ 6274 13.4/1000 1210

attendance before intervention Attendance after intervention (2003)

83 198

Previous treatment gap

93,10%

Treatment gap after intervention

83,60%

Increase PWE being treated

138,50%

Estimated reduction PWE not treated

10,20%

3.

Education

Primary healthcare nurses and environmental health technicians attended a one day workshop, which included sessions related to background knowledge, diagnosis, management of epilepsy, psychosocial issues and attitudes. Subsequently they were involved in public talks both in health centres and villages. The technicians trained village health workers (lay members in the community with an interest in health and health care) and supplied them with literature in

Out-Patient Clinic

the local language. The nurses and the district health education officer gave presentations in schools.

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Furthermore a seminar was held for with participation of one teacher from each school in the area, to enable this teacher to act as an epilepsy resource person for the school and for parents. Each of these teachers was asked to organise at least one activity related to epilepsy in the school (i.e. produce a play, speak at a public function, organise a competition, etc.).

Conclusions 

Training primary health care workers to diagnose epilepsy with generalised convulsive seizures is effective and safe. No patients treated inappropriately were found in quality assurance visits by the principal investigator. Recommendations were made to adopt a national policy of primary health care worker training to diagnose and treat forms of epilepsy to the National Drug and Therapeutic Committee as well as the Ministry of Health and Child Welfare.



It was proven to be possible to apply training and public education interventions in the most unfavourable environments.

Organizational Context and Management Structure The project was managed by the Zimbabwe Committee of the Global Campaign Against Epilepsy. Principal investigators were appointed and a sub-committee including the District Nursing Officer and the District Medical Officer was set up. An administrative assistant was appointed to implement and convey decisions. In addition to the projects described above other projects were initiated, which are (more or less) based on protocols which were developed in collaboration with and/or under the aegis of the Campaign, but with no or limited involvement of the Campaign in the execution of the projects, for instance in the AFRO Region.

Congo The Congo National Project on epilepsy was initiated and monitored by WHO AFRO and aimed at integrating epilepsy management at a primary health care level. It was funded by WHO AFRO.

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AMRO (PAHO) REGION Brazil Situational analysis: Brazil is a country of continental dimensions (8,511,965 km2) located in South America. It is divided into 32 federation units. According to the census of 2000 it has a population of 170 millions inhabitants. It has been a Republic since 1889 with a government consisting of three powers: Executive, Legislative and Judiciary. It has an elected President, National Congress (Congress and Senate), and a Supreme Court. The gross internal product (GIP) of the country (2000) averaged R$ 6.559,94 (~ US$ 2,630.00) per capita, however, with striking regional differences. The unemployment rate has been estimated to be around 6% in metropolitan areas (2000). The illiteracy rate decreased from 25.5% in 1980 to 20% in 1991. In the Southern and South-eastern regions the illiteracy rate under 24 years of age is 4% (1991). Brazil has a well-structured federal constitution which states that health is the right of every citizen and the duty of the State. This became official by a law passed on September 19, 1990 thereby creating the Unified Health System (Sistema Ăšnico de SaĂşde [SUS]). It is estimated that SUS provides health care coverage to 77% of the population in Latin America and the Caribbean. Few epidemiological studies have been carried out in Brazil. Marino et al. (1986) found a prevalence of epilepsies. According to data accessed by the Ministry of Health, epilepsies rank 30th place among the principal causes for hospitalization. Possibly the majority of these is comprised of patients with status epilepticus or with frequent seizures. Parasitic diseases are risk factors which may explain the high incidence of epilepsy in developing countries, including Brazil. Main causes of epilepsy in the country are: -

Neurocysticercosis is the most prevalent of these parasites, and it is endemic in the southeastern, south, and central-western regions. It is the most often diagnosed risk factor associated with epilepsy in adults in these areas.

-

Perinatal brain damage is another risk factor to explain the high incidence of epilepsy. This is possibly true in regions with inadequate prenatal care.

-

High incidence of motor vehicle accidents leading to traumatic brain injury in our society is also an important risk factor of epilepsy.

The basic strategy for the prevention of epilepsy, in a country like Brazil, should include prenatal care, safe delivery, control of infectious and parasitic diseases, and reduction of brain injury due to traumatic brain injury and stroke. In addition to increased risk of morbidity and mortality associated with epilepsy, patients face stigma placed upon them by the community. Stigmatization prevents patients of disclosing their condition, and

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at times to look for treatment. This clearly has impact on employment, education, and ultimately patients’ quality of life and their integration in society. Treatment with antiepileptic medication can render seizure-free up to 70-80% of patients. The most frequently prescribed antiepileptic drugs (AEDs) in the country are: carbamazepine (29%), clonazepam (22%), phenobarbital (17%), phenytoin (11%), valproate (8%).

Objectives This project aims at testing the feasibility of diagnosing and treating epilepsy at primary care level with rational use of the first line antiepileptic drugs (phenobarbital, phenytoin, carbamazepine, and valproic acid). The long-term prospect is to integrate epilepsy management into the existing primary health delivery system in a sustainable manner. If this project is shown to be effective it will be recommended for implementation nationwide.

Overall aims • To generate procedures that will improve the identification and management of people with epilepsy in urban area within the existing primary health care system and with community participation. • To develop a model of epilepsy treatment at primary health level that can be applied nationwide.

Specific aims 1.

To assess current management practices (identification, treatment, and follow-up) of patients with epilepsy in urban areas of the country.

2.

To estimate: a) prevalence of active forms of epilepsy, b) the scale of the treatment gap via an active case finding methodology, and c) changes that this project may bring to these figures in the study area.

3.

To ascertain the etiology and risk factors in association with epilepsy in the community.

4.

To reduce and eradicate preventable causes of epilepsy in the community.

5.

To ascertain the knowledge, attitudes and practice of epilepsy amongst health practitioners at the primary health level prior to the study and after they have undergone training for epilepsy.

6.

To develop technical norms for identification, education, treatment and follow-up of patients with epilepsy at a primary health care level.

7.

To carry out a feasibility study of the treatment of forms of epilepsy using first line antiepileptic drugs by primary health care physicians.

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8.

To develop strategies for implementation of cost-effective surgical program for treatment of epilepsy.

9.

To develop a program for continuous professional education on epilepsy for primary health workers.

10.

To promote public awareness about epilepsy via and educational program aimed at the community.

11.

To promote continuing education for primary and secondary school teachers and diffusion of information on epilepsy.

12.

To develop a program to de-stigmatize epilepsy and improve its social acceptance.

13.

To develop local advocacy and support groups for people with epilepsy.

14.

To reduce the economic and social burden of epilepsy in the study areas.

Methodology This demonstration project is composed of three parts: 1)

Epidemiological estimation. This provides a realistic estimation of the prevalence of epilepsy and untreated active epilepsy in the study area. The epidemiological exercise aimed to estimate the prevalence of active epilepsy and the treatment gap. A door-to-door survey was carried out in the study area using the screening questionnaire based on a local modified Portuguese version of ICBERG screening instrument. The survey was repeated using a similar methodology and instruments at the end of the four-year period to ascertain if there had been a measurable change in the treatment gap in the areas surveyed.

2)

Service Delivery (Intervention Study). This covered the issues of diagnosis, AED treatment, follow-up and referral networks. The target population consisted of patients with epilepsy treated or untreated who lived in the study area. A variety of case-finding methods was used. Identification of patients was initially carried out by health assistants, whilst local neurologists were responsible for checking the patients who had been selected and referred for complementary examinations. Identified patients were invited to participate in this study. Patients who did not wish to enrol in this study did receive medical treatment. Patients with confirmed diagnosis of epilepsy who wished to participate in this study were enrolled in the study protocol. Health assistants at the primary health centres were responsible for explaining the nature of this study, obtaining a written consent form and complete a study entry form. Physicians at the primary health centre were responsible for prescribing medication, and filling in the medical report forms.

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At the end of 12 months treatment, an objective and two subjective assessments were carried out to determine the effectiveness of the treatment. In order to ensure the quality of the project, a framework for monitoring the project was devised. The members of the Executive Committee monitored the project’s progress and checked the study area every 3 months. Annual reports on the progress of the project were generated.

3)

Education, Social and Community Intervention. This covered the educational and social aspects of the project. The project lasted four years. During the first year, the following activities were carried out: •

Preparation of training modules

Design of instruments, including the screening questionnaire

Compose training material and work menu

Validation of screening questionnaire

Training of trainers

Training of family physicians

Door to door survey

End of first year assessment

All physicians and nurses received basic epilepsy training. The training modules were standardized and covered the following aspects: •

Epidemiology and public health aspects of epilepsy

Classification of seizures and epileptic syndromes

Causes of epilepsy

Differential diagnosis of epilepsy

Drug treatment of epilepsy

Management of epilepsy

Febrile convulsion and benign childhood epilepsy syndromes

Nature of the study and how to fill-in the study forms

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Training of professionals was an important component of the Demonstration Project in Brazil, and with some success, as the letter above clearly shows.

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Training of trainers

Each primary health care team also received a work plan. All physicians completed a questionnaire to ascertain their knowledge, attitudes and practice (KAP) in relation to epilepsy prior to the first training session. To assess the effectiveness of the training module, all participants completed the same questionnaire 3 to 6 months later. An educational programme was directed at patients and their families. It is aimed at informing them about: •

The nature of epilepsy, its characteristics, cause and prognosis.

•

The nature of treatment, its objectives, the use of drugs, the importance of compliance, the potential side effects of drugs, and the duration of treatment.

•

General health measures and the emergency treatment of seizures.

The issue of stigma in epilepsy and layman perception and prejudice against patients with epilepsy was explored in different segments of society An educational program aiming at decreasing the amount of social stigma, in areas of social relations, employment, leisure activities, schooling, etc. was developed. This aimed at local primary and secondary school teachers because they exercise an important role in their communities The aim of this program was to address attitudes regarding aetiology, shame and the lack of infectiousness of epilepsy. A questionnaire on public perception of epilepsy was applied to the teachers before and after the educational program as well to students to assess changes. Assistance was given to create advocacy/support groups composed of local laymen and health professionals.

Organizational Context and Management Structure This demonstration project was based on the guidelines of the Global Campaign Against Epilepsy, which was launched in 1997. Professors Li Li Min and Ley Sander were the coordinators of the project.

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The Department of Neurology was responsible for the work involved in the Demonstration Project. The Project was carried out in the District of Barão Geraldo in Campinas; and Districts of Santo Antonio and Jaguaré in São José do Rio Preto. The main setting of this project was based at the local primary health centres of these three Districts under Municipal Health Departments and their referral tertiary centres. The responsibility for the local activities rested with the local personnel. The Project was coordinated by Hanneke M. de Boer (ILAE/IBE) and Dr. Leonid Prilipko on behalf of WHO.

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Honduras

Situational analysis Honduras has a geographical area of 112,492 km2 and a population of about 7,400,000 people (62 people/km2). The country is administratively divided into 18 departments, and 46% of the population lives in urban areas. The major source of employment comes from the agricultural sector (34%). Most of the population (82%) has access to health services, and health service distribution is through the Health Secretariat (60%), Honduran Social Security Institution (12%) and the private sector (10%). In general terms, there are 8.2 doctors and 3.2 nurses per 10,000 population. The Health Secretariat has organized health services in 18 department regions and two metropolitan regions (Tegucigalpa and San Pedro Sula), which has decentralized contracting personnel and financial execution. The country has been affected by natural disasters and migratory phenomena, which has caused the loss of lives and economic and psychosocial damage.

Overall aims The objective of the project is to develop a sustainable, efficient and applicable strategy to address epilepsy at the primary health care level with supervision and support from the specialized system. This strategy will reduce the gap of access to diagnostic and therapeutic resources and improve health care and services for people with epilepsy.

Specific Aims 1. To estimate the prevalence of active forms of epilepsy in the Municipality of Juticalpa, Olancho. 2. To estimate the gap in diagnosis and treatment of patients with active epilepsy. 3. To reduce the gap in diagnosis and treatment in the Municipality of Juticalpa (Department of Olancho, Honduras) through a strategy based on primary health care. 4. To identify knowledge, attitudes and behaviors of patients with epilepsy and their families and to develop psycho-educational programs to manage adherence to treatments and healthy lifestyle guidelines, as well as reduce stigma.

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5. To identify knowledge, attitudes and practices of epilepsy among primary health care professionals prior to the study and after the implementation of the medical education programs. 6. To develop an ongoing medical education program on epilepsy targeted at primary health care workers. 7. To encourage patients with epilepsy in the Municipality of Juticalpa to coordinate self-help partnerships.

Methodology The total duration of the project will be four years. In the first year, activities include: planning and preparatory work; identification of study sites; epidemiological estimation of the prevalence of active epilepsy and the treatment gap; development of training materials; and training trainers and physicians. Activities to be carried out during the second and third year include: organizing and carrying out service delivery; community education and awareness raising activities; and ongoing training of health care providers as required. The monitoring of activities will be carried out during the three years. Fourth year activities will include: evaluating outcomes in terms of the reduction of the treatment gap, the improvement in the quality of services, and the improvement of social, educational and employment opportunities for people with epilepsy, as well as preparing a mental health care model to assess its applicability at the country level.

A team of medical students were trained for the house-to house survey

Organisational context and management structure The Honduran Ministry of Public Health agreed to support the approval and implementation of the plans and procedures that will be developed as part of the project. It will also ensure the participation of professionals and technicians of services involved in the project. Furthermore, the Ministry will be responsible for the management, coordination and evaluation of this technical cooperation project and will appoint personnel and technical units for these tasks.

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The Pan American Health Organization (PAHO/WHO) will facilitate coordination among the countries and institutions involved and also provide technical assistance. PAHO/WHO Regional Mental Health Project in coordination with the PAHO/WHO Representation in Honduras, will manage the technical advisory required to support the country during the project. The GCAE experts will provide their technical expertise during the planning, implementation and monitoring phases of the project. The University of Honduras experts will provide technical expertise and supervisory support to the project. They will be the project’s investigators and will participate in its implementation. An Advisory Panel has been established including experts from the above mentioned partners. All participating institutions, with PAHO/WHO’s support, agreed to develop the technical cooperation plan within the expected schedule and comply with all relevant responsibilities. They also commit to conduct a formal evaluation of the execution of the project and its results, as well as develop a final report documenting its impact and experiences. The project funding will be ensured through the participation of the Honduran Ministry of Health and PAHO/WHO. PAHO/WHO will provide the funds described in the project in accordance with the rules and procedures established in Honduras

Results The study population was 9864 people, and the Prevalence found for active epilepsy was 7.7/1000

EEG at out-patient clinic

and 6.5/1000 and 1.22/1000 for inactive epilepsy. The prevalence by gender was for women 4.3/1000 and for men 3.4 / 1000; the treatment gap for active epilepsy was 48.4%. This is a pilot demonstrative study in Honduras, Central America following the WHO model to determine the treatment gap of epilepsy. The high treatment gap found should be used to implement public health measures in this area aimed at reducing the treatment gap. Recently the next Phase was initiated aiming at the reduction of the treatment gap, with the support of the Ministry of Health and the Neurology training Programme.

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EURO REGION Georgia Introduction During Phase II of the Campaign Demonstration Projects were set up in the AFRO, AMRO, SEARO and WPRO Regions, but no such activity had been initiated in European Region. After ample discussions with the Regional Advisor for Mental Health it was decided to select Georgia as the first country to develop a Demonstration Project in the European Region as the country fulfilled all formal selection criteria for such a project.

Situational Analysis Georgia is one of the republics of the former Soviet Union and is situated in the Caucasus region of Eurasia, at the juncture of Eastern Europe and Western Asia, it is bounded to the west by the Black Sea, to the north by Russia, to the south by Turkey and Armenia, and to the east by Azerbaijan. Georgia covers a territory of 69,700 km² and its population is 4.3 million. The population consists of 12 ethnical groups of whom 52% are urban and 48% rural. The gross income per capita is US$ 250,-. After the announcement of independence in the early nineties, due to periodic external aggression and separatism in the country, one third of the territory of Georgia went out of the area of its jurisdiction. Since then up to 500 000 thousand refugees have been living in very poor social economic conditions in various parts of the country. Economic, social and health care systems have been totally destroyed. The economy in Georgia collapsed and the country received developed country status. Health care reforms started and in most cases were unsuccessful. In 1997 the only epilepsy centre was abolished and in 2001 the entire Institute of Neurology was destroyed. Epilepsy completely disappeared from the health care system. Visits to doctors and investigations became chargeable and costly, for AEDs the patients had to pay out of pocket. Cases of self-treatment, use of herbal medicines, admittance to fortune-tellers, mullahs etc. dramatically rose. As a result, inadequate treatment, treatment gaps, status epilepticus and epilepsy mortality cases increased. From 2004 democratic activities in Georgia went through a positive evolution, but many difficulties in the flow of this process are still remaining. Presently there is a huge gap between a few clinical units focusing on epilepsy and the rest of the health care system in Georgia, where the level of knowledge on epilepsy is extremely low. The main problems facing epilepsy care are: 

Poor state financing of health care system (75 000 USD per year), absence of medical insurance;

Absence of registration system of morbidity and ambulatory supervision;

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Absence of coordinating system of drug supply, high prices on medicines and their unavailability for the most part of population;

Absence of the standards of disease management;

Lack of educational and special literature, lack of treatment and diagnostic guidelines;

Very low educational level of primary health care physicians and nurses, as well as neurologists on epilepsy;

Lack of epilepsy info for the patients, high stigmatization level;

Absence of neuropsychological service and psychosocial rehab;

Low quality of life of epilepsy patients

Objectives: The project aims at testing the feasibility of diagnosing and treating convulsive forms of epilepsy at primary care level, using phenobarbital, carbamazepine or sodium valproate as the first option. The long-term object is to integrate epilepsy management into the existing primary health delivery system in rural and semi-rural areas of Georgia in a sustainable manner.

Overall aims 

Improvement of epilepsy patients manifestation, treatment and problem management in the provinces of Georgia on primary health care level with active participation of society.

Elaboration of epilepsy management model on primary health care level, which might be implemented universally.

Specific Aims 

To estimate the prevalence of active forms of convulsive epilepsy, the scale of the treatment gap via an active case finding methodology, and changes the project may bring to these figures in the study area.

To assess the impact of a training for epilepsy of health practitioners at the primary health level on their practice.

To develop national guidelines (manual) for the identification, education, treatment and followup of patients with epilepsy at a primary health care level.

To carry out a feasibility study of the treatment of convulsive forms of epilepsy using carbamazepine, valproate and/or phenobarbital by primary health care doctors.

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To develop a programme for continuous professional education on epilepsy for primary health care professionals.

To promote public awareness about epilepsy via an educational programme aimed at the community.

To develop local advocacy and support groups for people with epilepsy.

To reduce the economic and social burden of epilepsy in the study areas.

Methodology: The Project consists of three parts: 1. Epidemiological evaluation – facilitates to find out a real picture of untreated patients; 2. Provision of medical services to people with epilepsy (intervention study): correct diagnostics elaboration of monitoring schedules for the patients on PB, CBZ and VPA treatment; 3. Public education and social intervention: education of various target groups on social aspects of epilepsy. 1 Epidemiological evaluation The epidemiological exercise aimed at estimating the prevalence of active epilepsy and the treatment gap. Patients’ screening was performed in selected areas by means of special surveyors and door-todoor assessment. A screening Questionnaire based on the one used previously in China was utilized. The Questionnaire was adapted and subjected to Georgian-English onward-backward translation. before the final version was validated. This was carried out at the Epilepsy Prevention and Control Centre (CPCE) and showed sensitivity 98.8% and specificity 87.0%. The prevalence of epilepsy was found to be 0,8%. The treatment gap (people not being diagnosed and treated appropriately) came to 66,6% (out of 88 people with epilepsy 14 were newly diagnosed and received no treatment before, 8 were not treated at all and 36 were treated inappropriately). The data will be revisited in order to determine the lifetime prevalence. The survey will be repeated using a similar methodology and instruments at the end of a four-year period to ascertain if there has been a measurable change in the treatment gap in the areas surveyed. 2. Provision of medical services to people with epilepsy (intervention study) The target population are patients with untreated convulsive epilepsy who fulfil the entry criteria and live in one of the study areas. A variety of case-finding methods was used. Identification of patients is primarily carried out by senior primary health care physicians from the above mentioned institutions.

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Each neurologist at the family medicine centre or policlinics usually knows each resident’s health condition and family situation and this help with the identification of patients. Patients will be encouraged to self-report. The doctor/neurologist completes a diagnostic questionnaire for those patients preliminary identified as possible cases of convulsive epilepsy. Senior primary health care physicians will then confirm the diagnosis. All primary health care physicians in the study area receive a training in epilepsy and a continuous educational programme in epilepsy has been initiated. The neurologists will be responsible for checking the selected patients. For the patients included in the study a special inclusion form will be filled by the local investigator where patients’ demographic data, retrospective assessment of convulsive seizures and employment status will be noted. If the patient is an employee or is a student, some additional info from these institutions will be obtained. After performing these procedures, PB, CBZ or VPA will be prescribed according to the agreed norms and schedules. Primary health care physicians will explain the necessity of taking AEDs regularly, keeping prescribing regime tight etc.; inform the patient about side effects of AEDs with advice to contact the doctor as soon as these appear. The patients will receive contact information about the primary health care physician and the schedule of visits to the doctors. Patients included in the study will be invited to attend the medical centres of the selected districts of Tbilisi every two weeks for the first two months, and monthly thereafter. The doctor will assess frequency of epileptic seizures, side effects and treatment efficacy. In case of any doubts, or if the side-effects are severe or persistent, the patient should be referred to the local neurologist. Preliminary data about the number of patients with epilepsy involved in this study will be available later. If a patient withdraws from the study, a termination form will be filled recording the reasons for the drop out. The patient will receive alternative or further treatment or will be referred to another level of care, according to clinical needs. If the patient is excluded from the study, a special form for exclusion will be completed. The reason of exclusion should be defined. In such cases the patient will be sent to the appropriate institution for further treatment. 3. Educational and social intervention These activities aimed at the following target groups 

Local health care primary level personnel -nurses, also volunteers, paramedics etc;

Local health care secondary level personnel (neurologists, psychiatrists);

Patients and their families;

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Personnel of primary and secondary schools;

Local authorities (government, police);

Clergymen.

All local investigators and primary health care doctors received a training in epilepsy. The trainings will be performed by the Center of Epilepsy Management, Investigation and Education at Tbilisi State Medical University and Epilepsy Control and Prevention Center working groups. The following issues on epilepsy are covered: 

Epidemiology;

Primary health care aspects of epilepsy;

The causes of epilepsy;

Differential diagnosis of epilepsy;

Diagnostics of convulsive forms of epilepsy;

Adequate AED treatment of epilepsy;

Epilepsy management;

Current project purpose and how to fill in special forms.

Meeting local team and international

During the training every doctor will be provided with a working plan and educational literature. Prior to the training all doctors complete in a questionnaire for the assessment of awareness on epilepsy, attitudes towards epilepsy and epilepsy management experience (KAP). These questionnaires are completed before study starts and also 3 and 6 months after the study. The Georgian version of the KAP questionnaire is being used. Public education on epilepsy is aiming at a number of target groups including various members of society - school teachers, employees, police, also professional groups - journalists, clergymen etc. The purpose of educational activities for patients and their families is to inform them about: 

Epilepsy disorder, causes and prognosis;

Epilepsy treatment, importance of compliance, side effects;

First aid during epilepsy seizure;

The educational programme has been developed by the working groups. Info leaflets have been dispensed among patients and their caregivers. Local physicians and neurologists hold regular lectures for patients and their caregivers. Social and public intervention aims at: reducing of epilepsy stigma in society. The target audience for this activity consists of teachers of primary and secondary schools as they have much influence on public attitudes. Their help is very important to reveal epilepsy in early stages

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Training of PHC Physicians

The educational programme focusses on the information to the public, on superstitions and misunderstandings concerning epilepsy, which are the important sources of discomfort and low selfesteem of people with epilepsy. Additional activities include: 

Information on epilepsy via public communication facilities;

Distribution of info on epilepsy to the public;

Elaboration and distribution of posters;

Setting up supportive groups consisting of local health care authorities, patients/caregivers and volunteers.

Organisational Context and Management Structure This demonstration project is carried out under the auspices of the GCAE. The work is executed by two teams and two principal investigators: a team from the Centre for Epilepsy Management, Research and Education, Tbilisi State Medical University headed by Dr. Natela Okujava and a team from the Centre of Epilepsy Control and Prevention headed by Dr. Otar Toidze. An Advisory Board was proposed by doctors Natela Okujava and Otar Toidze and appointed accordingly by the Campaign Secretariat. Leonid L. Prilipko (succeeded by Dr. Tarun Dua) and Hanneke M. de Boer will act as supervisors/monitors of the Project on behalf of the Global Campaign's Secretariat, whilst Prof. Ley Sander will be the Scientific Project Leader. The Project was supported by the Ministry of Labour, Health and Social Affairs of Georgia.

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Sustainability An important aspect of that each Demonstration Project is ensuring that sustainability is built into its design and that outcomes are measurable. Four scaling up projects are in the process of development The continuation of the collaboration between the present partners in Georgia and one of the international partners, in this case SEIN, was a logical next step in order to ascertain sustainability of improving epilepsy care in Georgia. SEIN and the Simon Khechinashvili University Hospital (SKUH) in Tbilisi signed a Memorandum of Understanding in the area of treatment and knowledge of epilepsy and the organisation of joint workshops for the exchange of knowledge and expertise. SEIN will assist SKUH with the establishment and development of a clinical neurophysiology department, including long-term EEG facilities. A business plan has been drawn up. Furthermore staff from this hospital also collaborated in the SEIN/VUmc Course on Clinical Epileptology, a course for young doctors from resource-poor countries, as a teacher. A Memorandum of Understanding is also in preparation with the Institute of Neurology and Psychology, Tbilisi, aimed at the establishment of an ‘Information, Consultation and Training Center for Children with Epilepsy and Developmental Disabilities’. Scaling up of the project National Epilepsy Programme. Consultations at National and International level for the development of such a programme in Georgia have started. The blue-print for such a programme is being discussed further with politicians in Georgia.

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SEARO REGION Introduction Assuming a prevalence of 10 per 1000, there are an estimated 15 million people with epilepsy in the 11

Member Countries of the WHO South-East Asian Region. More than 80% of these people live in rural areas where appropriate services for neurological disorders are very limited In 2005 the WHO Regional Office in South East Asia reported that the magnitude of the problems of epilepsy and the huge treatment gap, as well as its considerable social and psychological impact in the Region would make it imperative for all countries to develop a national strategy for the prevention and control of epilepsy with the ultimate objective is to improve the quality of life of people with epilepsy. WHO SEARO launched an initiative to deliver at least minimum services for neurological disorders in the community, using community-based health care providers, epilepsy was one of the conditions included in this initiative. WHO SEARO initiated Projects in the following countries:.

India Epilepsy projects were initiated in 4 districts (Namkum, Ranchi, Sarsol, Kanpur, Manimajra, Chandigarh, Chattarpur, Delhi ), where previously a survey was done amongst health care providers. The progress made thus far includes: 

Training and orientation of the research staff regarding the project

Development and finalization of data collection forms for the project (Any numbers of patients etc.?)

Development of IEC material and finalization of IEC strategy (Hanneke, what does IEC mean?)

Training of 93 Community Health Volunteers in 45 villages in the identification and care of generalized tonic clonic seizures has been completed

Training of physicians is in progress.

Indonesia SEARO’s approach to reducing the treatment gap in epilepsy was agreed upon. A training programme started in November 2005, using the instruments developed by WHO SEARO. Financial support was provided.

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DPR Korea The Ministry of Public Health (MOPH) and neurologist/epilepsy experts in the country agreed that epilepsy was a major public health problem in DPR Korea. The MOPH reported that prevalence data had been collected and would be available by the end of 2006. The shortage of anti-epileptic medication was a matter of great concern to the government. WHO provided some funds for the purchase of anti-epileptic medication. 

The training of master trainers for identification and management of epilepsy was completed in November, 2004.. The participants were physicians, neurologists and epilepsy experts from all over the country.

WHO technical material on identification and management of epilepsy had been translated into Korean.

Maldives WHO SEARO assisted Maldives in capacity building through training community health workers in the identification and management of epilepsy, using SEARO modules. Two training workshops were held for community health workers on the identification and management of generalized tonic clonic seizures (2004/2005). Data collection, reporting and monitoring forms were also provided to the government.

Myanmar An epilepsy project was conducted in in the Ayeyarwady division of Nyaungdon township with a population of 2,39,632 people (87.5% rural and 12.5% urban).) The progress made included: 

Training of all health care workers for identification and care of major seizures.

Training of qualified medical practitioners for management of epilepsy with phenobarbital

A video was prepared on "Myths and Reality" (Myanmar version) for stigma reduction.

Patient identification was initiated.

If this project would be successful in one district, the Government would extend it to 4-5 districts in different parts of the country, and later nation-wide.

Timor-l’Este A country survey identified epilepsy as one of the 3 most common neuropsychiatric disorders. Nurses and other health workers were trained in the identification and management of epilepsy under the AusAid programme. However since the AusAid programme concluded in 2005, WHO SEARO intended to carry forward this programme using its technical material..

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3.1.6 Strategic Planning Meetings for Campaign Phase III Strategic Planning Meetings were organised by the Campaign Secretariat involving the Executive Committees of IBE and ILAE and a number of international experts in Switzerland in 2004 and 2005. •

to discuss progress of on-going activities

to start planning for Phase III

to discuss fundraising activities

The following recommendations were made: Technical Recommendations: •

Develop surveys as a marketing device for the Campaign

Increase the involvement of Regional Commissions/Committees

Increase fundraising activities

Update and upgrade the Campaign web site

International congresses: GCAE sessions to focus on various topics

Logo to be protected/registered

Strategic Recommendations •

Continuation of demonstration projects on the reduction of the treatment gap:

Development of demonstration projects on different topics •

Legislation

Stigma

Surgery

This led the GCAE towards a third phase during which the on-going actions (namely the demonstration projects on the treatment gap) were complemented by other initiatives aimed at getting a direct impact on the burden of epilepsy across the world. Finally a number of new projects were initiated by the end of Phase II, which actually materialised in Phase III of the Campaign, these projects include: •

Atlas Project

Development of evidence-based guidelines

WHO Project on the Burden of Epilepsy

Measuring the impact of Campaign activities at a national level

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WPRO REGION China: Situational analysis The People’s Republic of China is situated in the east of the Asian continent. It covers 9 600 000 km2 and is divided into 23 provinces, 5 autonomous regions and 4 municipalities. These divisions contain 335 districts, 2858 counties, 48 000 towns and 822 000 villages. According to the national records, in 1998, China had a population of 1.25 billion people of 56 different ethnic groups. The urban population was 379 million (30.4%) and the rural population was 869 million (69.6%). The Chinese gross national product (GNP) was ¥7955 billion (US$ 980.2 billion with GNP/capita being US$ 780) in 1999; urban resident income was ¥5425 whilst rural resident net income was ¥2160 in 1998. Since the adoption of policies leading to economic reform and opening to the outside world, the Chinese primary health-care system (the three-tier rural medical care system: county – town – village) has further developed its disease control activities and health campaigns. The system now provides comprehensive and sustainable health care to rural and semi-rural populations and covers the great majority of the population.. There are two million professional health workers (including western and Chinese physicians), averaging 1.6 per 1000 population. The medical care system is currently undergoing reforms with the result that health service coverage is expanding. This is part of the Chinese government’s great efforts in attaining the strategic goal of “health for all”. One of the greatest problems facing people with epilepsy is the stigma placed upon them by the community. Studies in China suggest that people with epilepsy are generally withdrawn from society; they feel isolated and are either overprotected or neglected..

Overall aims 1. To generate procedures that will improve the identification and management of people with convulsive forms of epilepsy in rural and semi-rural areas of the country within the existing primary health care system and with community participation 2. To develop a model of epilepsy treatment at primary health level that can be applied nation-wide.

Specific Aims: 1. To assess current management practices (identification, treatment, and follow-up) of patients with convulsive forms of epilepsy cases in rural and semi-rural areas of the country.

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2. To estimate: a) the prevalence of active forms of convulsive epilepsy, b) the scale of the treatment gap via an active case finding methodology, and c) changes the project may bring to these figures in the study area. 3. To ascertain the knowledge, attitudes and practice of epilepsy amongst health practitioners at the primary health level prior to the study and after they have undergone training for epilepsy. 4. To develop technical norms for the identification, education, treatment and follow-up of patients with epilepsy at a primary health care level. 5. To carry out a feasibility study of the treatment of convulsive forms of epilepsy using phenobarbital by primary health care doctors. 6. To develop a programme for continuous professional education on epilepsy for primary health 7. To promote public awareness about epilepsy via an educational programme aimed at the community. 8. To develop local advocacy and support groups for people with epilepsy. 9. To reduce the economic and social burden of epilepsy in the study areas.

Methodology This demonstration project is composed of three parts: 1.

Epidemiological Estimation – to provide a realistic estimation of the prevalence of untreated active epilepsy in the study areas.

2.

Service Delivery (Intervention Study) – to cover the issues of diagnosis, phenobarbital treatment, follow-up referral networks.

3.

Educational, Social and Community Intervention – to cover the educational and social aspects of the project.

1.

Epidemiological Estimation

A door-to-door survey was carried out in 5 representative counties each with a population of about 10,000 people (total population: 50,000). A screening questionnaire was designed to identify patients with convulsive seizures. The questionnaire was validated at the Beijing Neurological Institute for specificity and sensitivity. The questionnaire was based on the WHO screening questionnaire previously used in China and on the ICBERG screening instrument11. Adjustments to the questionnaire were made accordingly. All participants were trained to use the validated screening questionnaire and mastered the standard before survey. The survey was repeated using a similar methodology and instruments at the end of a

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four-year period to ascertain whether there had been a measurable change in the treatment gap in the areas surveyed. 2

Service Delivery (Intervention Study)

Patients who qualified for entry into the study received treatment with phenobarbital according to the technical norms set out.. The town hospital physicians will complete a study entry form at this point. Demographic details, and a pragmatic retrospective estimation of the numbers of seizures, particularly convulsions, that the patient has experienced in the previous, week, month and year were recorded. A record of the current occupation status of the patient (work and school) was made. If the patient was employed or attends school, an estimation from work or school due to epilepsy was made and recorded. The senior primary health care physicians and village doctor explained to the patient the importance of regular compliance with medication and how it should be used. The patient was informed about common side-effects of the medication and advised to report to the doctor any untoward effect that they might experience once treatment had started. The patient was provided with contact information for the primary health care team and also instructed on the importance of follow up visits. Patients included in the study were invited to attend the town hospital or village clinic every two weeks for the first two months and monthly thereafter, for dose adjustments, side-effects assessment, compliance checking and to receive further supply of the medication. The doctor will fill out a follow-up form for each visit. Number of seizure, side effects and effects of treatment were recorded. If the patient reported the presence of side effects, the senior primary health care physicians dealt with these according to instructions in the technical norms. In case of doubts, or if the side-effects were severe or persistent, the patient should be referred to the local neurologist. Compliance was assessed at every follow-up appointment according to given instructions. The patient or his/her parents recorded the seizures, the medication taken, any effects of the treatment and other issues. Those patients working or at school were questioned about their attendance record from the previous visit and any changes of occupational status were recorded. The village doctor could at any time request a review by the senior physician if severe side-effects developed, or in the case

Out-Patient clinic

of clinical uncertainty or if the patient’s seizure control proved to be difficult. The patient was reviewed at least once every three months by the local neurologist in charge of the case.

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Patients were withdrawn from the study if one or more of the following situation arose: 1. The treatment is found not to be effective by the supervising doctor. 2. The patient experiences an important deterioration in seizure control (i.e. an increase of 50% or more of seizures or status epilepticus). 3. Patient or guardian decides against continuing treatment. 4. The patient is found to be non-complaint with the treatment in 3 consecutive opportunities. 5. The patient fails to attend 3 follow-up appointments. 6. The patient is found to have a progressive neurological disorders. 7. The patient develops a heart, liver or kidney condition. 8. The patient develops severe side-effects to phenobarbital, confirmed by the supervising doctor. If a patient did withdraw from the study, a termination form was filled out recording the reasons for the drop out. The patient received alternative or further treatment or was referred to another level of care, according to clinical needs. 3.

Educational, Social and Community Intervention

All physicians and a number of the village doctors in each of the study areas received basic epilepsy training. This was provided by the team of the Beijing Neurosurgical Institute and by the local neurologists who collaborated in the study. The training module covered the following aspects: 

Epidemiology of epilepsy

Public health aspects of epilepsy

Causes of epilepsy

Differential diagnosis of epilepsy

Diagnosis of epilepsy and particularly of generalised tonic clonic convulsions

Drug treatment of epilepsy

Management of epilepsy

Nature of the study and how to fill-in the study forms

Raising awareness

Each of the doctors attending this project in training received a work plan. Prior to the first training all doctors completed a questionnaire to ascertain their knowledge, attitudes and practice (KAP) in relation to epilepsy. To assess the effectiveness of the training module, all participants were asked to complete the same questionnaire between 3 and 6 months later. A Chinese

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version of the KAP questionnaire that was developed by the Pan American Health Organisation (PAHO) was be used An educational programme about epilepsy was introduced throughout the study areas via a number of media channels and aimed to show the general community that epilepsy is a treatable disorder. The programme provided information about: 

The nature of epilepsy, it characteristics, cause and prognosis

The nature of treatment, its objectives, the use of medication, the importance of compliance, the potential side effects of medication and the duration of treatment

General health measures and the emergency treatment of seizures

The content of this programme was prepared by the team at the Beijing Neurological Institute and by the Beijing Epilepsy Association. Information sheets were handed to the patients and their families. A number of local physicians and neurologists lectured the patients and their families on a regular basis. Lectures and group discussions for patients and their families were also arranged during this time, and community leaders and local teachers were presented with information about epilepsy, its causes and its treatment. Patients were encouraged by the media and by community leaders to come for free diagnostic assessment and for management when appropriate9. Furthermore an educational programme aiming at decreasing social stigma, in areas of social relations, employment, leisure activities, schooling, etc. was developed. This aimed at local primary and secondary school teachers because they exercise an important role in their communities. The aim of this programme was to address attitudes regarding aetiology, shame and the lack of infectiousness of epilepsy. A revised version of the instrument used in a survey of public awareness, understanding and attitudes toward epilepsy in Henan province was completed by the teachers before and after the educational programme to assess changes.. Other activities carried out in the communities included: 

Informing people about epilepsy through public-address systems

Disseminating materials on epilepsy

Putting up posters

Developing Local Advocacy/Support Groups

A second epidemiological survey was carried out between September and December 2004 after the above interventional

Medical professionals visiting patient in rural China within Demonstration Project

and educational studies had been completed. This showed a

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minimum lifetime prevalence rate of 6.2/1,000 which is slightly lower than that of the previous survey. The prevalence of active epilepsy was 4.5/1000, similar to that found previously. In this survey half of the patients with active epilepsy had received anti-epileptic treatment in the previous week9. Organizational Context and Management Structure Dr. L. Prilipko and Hanneke M. de Boer were the Facilitators of this project on behalf of the Global Campaign Secretariat and also acted as supervisors/monitors of the Project, Prof J.W. Sander was the Scientific Project Leader. The Department of Diseases Control and the Department of International Cooperation of Ministry of Health, PRC were responsible for the Demonstration Project and delegated the tasks of ensuring concerted action to the Beijing Neurosurgical Institute. An Executive Committee was established at the Beijing Neurosurgical Institute. The members include each local co-ordinator and leader of the Public’s Health Bureau's. An advisory panel was also constituted and consisted of a representative of WHO, a representative of the Global Campaign Against Epilepsy, a representative of the local WHO office, members of the Executive Committee, the local co-ordinators, a member appointed by the local Public Health Bureau from each of the counties involved, a representative of the Neurological Society of China, a representative of the Beijing Anti-Epilepsy Association and representatives from the Ministry of Health.

Sustainability This Demonstration Project was successful in implementing treatment and management of convulsive forms of epilepsy in rural areas of China. Physicians with basic training have been shown to be able to treat people with epilepsy using PB as the first option. This cost effective approach can make a difference to the treatment gap in epilepsy; which was reduced by about 13% between 2001 and 2004. PB treatment as a first option for epilepsy has now been extended to 80 counties in 15 provinces in China. By the end of August 2008, over 35,000 people with epilepsy had been treated according to this protocol. It is scheduled to become part of a national epilepsy programme in the next few years17)

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Appendix IV: ILAE/IBE Global Outreach taskforce

INTRODUCTION The first meeting of this Taskforce took place in Boston, USA, preceding the AES conference in December 2009. During this meeting the Strategic Plan was drafted and goals formulated.

The Taskforce, meeting in Boston, USA

Goals and recommendations During the meeting the following needs were discussed:  Need for internal collaboration and cooperation It is essential that the Task Force involve the ILAE/IBE Regional Committees from the time of its conception.  Information sharing, dissemination and promotion mechanisms: both internally and externally. This could be achieved by: a. revisiting the web site b. revisiting the newsletter c. developing a brochure on the Campaign  Increasing awareness of existing Demonstration Projects (DP’s) by: a. identifying and describing DP’s . b. summarising mechanisms for sustainability  Developing new DP’s Consider as a goal initiation of new DP‘s in each region over the next 4 years

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 Improving the visibility of epilepsy and the Global Campaign in all countries (developed and developing), This could be achieved by: a. country support neighbour-to-neighbour b. review of tools available, should reports be renewed? How often should they be reviewed? Target audiences to be determined, legislation reports c. a white book d. individual country committees (stakeholders GCAE and other) e. a brochure on the Campaign f.

report on 12 years Global Campaign

 Identification and capitalisation of Campaign entry points with other international organisations and initiatives (mental health, neurological, paediatric, infectious disorders, trauma, etc)  Collaboration with regional and topic specific ILAE and IBE Commissions and Committees (via vice-presidents)  Encouragement of participation of individual chapters/members  Partnerships with other international organisations, which could be achieved by: a. identification of such organisations (EPNS, EFNS, WFN, WFNS, ICNA, CBM, Universities, WHO Collaborating Centres, MC, SF, Healthnet,etc.) b. identification of entry points (all of the above, others) a. use of emergency situations (MC, SF, Healthnet)  To act as liaison for information gathering and feedback on the burden of epilepsy project  Assessment of the role and methodology for country need resource assessment a. coverage/treatment/knowledge gap b. other indicators/measures of gap c. revisit definitions  Resource mobilisation The discussion of above issues led to the identification of five possible goals and recommendations as a start to the formulation of a strategic plan:

Goal 1. Improve the visibility of epilepsy and the activities of the Global Campaign in all countries -

Develop a central message

-

Develop and implement targeted strategies for delivering the message

-

Evaluate the impact of message campaign

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A Central message that may be used globally was developed and which a trademark registration process was completed. The slogan, “Stand up for Epilepsy�, depicts the need for all of us to be actively involved in changing the lives of people with epilepsy for the better

Goal 2 Promote activities of epilepsy projects at a country and regional level by use of -

-

demonstration projects (2 per region): o

promote xisting and previous projects

o

develop and promote guidelines on how to apply

o

collect data on sustainability

legislation o

-

regional reports o

-

complete and disseminate legislative recommendations complete and disseminate entry points

entry points o

identify and develop project opportunities with chapters/members

o

identify and develop project opportunities with health populations

Goal 3 Assess and strengthen health care systems analysis for epilepsy by acquiring a better understanding of the conceptual model, magnitude and scope of the coverage gap including the treatment and knowledge gap (definition), measuring the burden of epilepsy and methods for conducting country resource assessments Goal 4 Increase partnerships and collaboration with other organisations through -

participation of ILAE, IBE and WHO

-

partnerships with WHO and other international organisations (i.e. HOPE) and academic institutions

-

identification of other partners

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-

encouragement of regional commissions to liaise with individual countries and act as conduit between Taskforce and grass roots

Goal 5 Develop the necessary infrastructure and resources to achieve the expanded goals of the Campaign

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Appendix V: Recommendations from the Stakeholders meetings

INTRODUCTION During each of the stakeholders meetings recommendations or future activities and strategies were formulated, which are listed below:.

AFRO  Produce advocacy materials, developing a template. 1. A two pager on what is epilepsy, containing a personal story 2. A template aiming at training traditional Healers (what is it, where to refer to etc) 3. A template for politicians  Develop training materials  Resource mobilisation – including the support from WHO

Participants Stakeholders Meeting in Nairobi, Kenya

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AMRO 

Try and establish epilepsy as a priority, or at least in the agenda of the main program at country and local level;

Even more ambitious: Try to put epilepsy on the agenda of the ministers for health at regional level. Epilepsy has not been on the agenda in 50 years. It was proposed to undertake groundwork in 2010 and 2011 with the goal of having epilepsy on the agenda for discussion in Washington in 2012. In September 2012 the Strategic Plan was approved by PAHO/WHO’s Directive Council (see section6.9).

Participants Stakeholders Meeting in Cartagena, Colombia

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EMRO 

Increase awareness of the public

Improve education and training of professionals

Reduce the treatment gap

Generate political will to pay attention to epilepsy in the region

Link epilepsy activities to other ongoing activities/programmes since non-communicable diseases are not a priority

Explore the feasibility of including epilepsy training in other ongoing training initiatives in the region

Organise Public education and awareness raising activities in collaboration with epilepsy professional and lay associations

Continue with the dialogue between ILAE and IBE regional structures and WHO Regional Office

Participants Stakeholders Meeting in Dubai, United Emirates

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EURO 

Identify other NGO’s with similar objectives in order to try and join forces

Translate educational materials in other languages, i.e. for neighbouring countries or for population groups/minorities within countries such as migrants, prepare audio tapes or translate videos.

Develop and disseminate a common message for all countries. a.

Identify and approach appropriate target groups on national levels to disseminate the message

When trying to improve epilepsy care: a.

Improve epilepsy care within existing health systems, taking into account local beliefs of of minorities which is imperative when trying to improve epilepsy care

Improve the position of epilepsy in the regional health policy scene by: a. Joining forces with other countries b. Mentioning number of (preventable) deaths in epilepsy c. Advertising low costs of actual treatment (important for resource poor countries) d. Trying to put epilepsy on the agenda of the WHO World Health Assembly

Participants Stakeholders Meeting in Rhodes, Greece (ILAE) and Porto, Portugal (IBE)

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SEARO/WPRO 

Try to put epilepsy on the political agenda

Promote studies to look at epilepsy knowledge and practice.

Raising awareness

Collaborate with WHO on regional and national levels

Strive towards the development of a Regional document following the examples of the Americas and Europe

Address the problems regarding the use of phenobarbital

Participants Stakeholders Meeting Manila, Philippines

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Publications The main results and activities under the aegis of the Campaign can be found in the following publications: Global Campaign Against Epilepsy publications from 1996 to date: ILAE and WHO plan Global Campaign E.H. Reynolds, , Epigraph, issue 2, 1996 WHO and ILAE to join forces in a Global Campaign Against Epilepsy, WHO Press Release , WHO/56, 1996 ILAE/IBE/ Global Campaign Against Epilepsy; Why and what is it? H.M. de Boer, Int. Epilepsy News, issue no. 127, March 1997, page 6 Global Campaign against Epilepsy, Synopsis design campaign, Int. Epilepsy News, issue no. 128, page 18/19, June 1997 A Global Campaign was launched in June 1997, Int. Epilepsy News, issue no. 129, page 19, Oct 1997 Looking back, H.M. de Boer Int. Epilepsy News, issue no. 130, page 11, Dec/Jan ‘98 Global Campaign Against Epilepsy, E.H. Reynolds, Int. Epilepsy News, , issue no.130, page 10, Dec 97/Jan 98 Out of the Shadows, E.H. Reynolds, New Scientist, 1997; 155: 48 In the shadow of epilepsy, Editorial: The Lancet, vol. 349, June 28, 1997 Bringing Epilepsy out of the shadows: A Global Campaign is launched, Press Release WHO/48, 1997 Bringing epilepsy out of the shadows, R. Kale, BMJ 1997;315:2-3 Out of the Shadows - A Global Campaign Against Epilepsy, E. Chimatira, Epilepsy Backup, Newsletter of Epilepsy Support Foundation of Zimbabwe, July 1998 Global Campaign Against Epilepsy: agenda for IEA/IES, Neurology India vol. 46, issue 1 page 1-4, 1998 ILAE/IBE/WHO Focus on Latin America. Global Campaign Report, E.H. Reynolds, Epigraph, issue 1, page 2, 1998 Global Campaign: Focus on Latin America,

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E.H. Reynolds, Int. Epilepsy News, March/April, issue no. 131, page 17, 1998, European Declaration on Epilepsy, Int. Epilepsy News, March, page 8, 1999 Out of the Shadows, Global Campaign update - Towards 2000, E.H. Reynolds,, Int. Epilepsy News, issue no.135, page 10, June 1999 Global Campaign Update. Towards 2000, E.H. Reynolds, EPI News (Newsletter Epilepsy Assoc. Sri Lanka) no.29, page 5, Dec 1999 European Declaration on Epilepsy, Epilepsy News (Brainwave) issue 9 Spring 1999 Campagne globale contre l’épilepsie, A. Guillermit, Aispace Plus No.33, page 8, Dec 1999 Epilepsy out of the shadows, H.M. de Boer, EPICADEC News, no.14, page 19, Nov 1999 Editorial, EPICADEC News R. Reis, EPICADEC News, Nov 1999 Raising awareness, fighting sigma, improving care, Press Release WHO/67, 1999 ILAE/IBE/WHO Global Campaign Against Epilepsy, Annual Report 1999, Speaking openly, R. Pollard, E-Headlines no. 53, page 12, (Australian Epilepsy Associations), 1999 Global Campaign update: Towards 2000 A.E.H. Reynolds,, E-Headlines no. 54, page 6, (Australian Epilepsy Associations), 1999 The IBE/ILAE/WHO Global Campaign against Epilepsy: consultation on progress and project strategies, E.H. Reynolds, Mental Health Bulletin, no. 4, Sept 1999 Epilepsy in Latin America and the Caribbean: a survey on needs and resources, Levav, C. Stephenson, W. Theodore, Rev Panam Salud Publica Nov;6(5):342-5, 1999 African challenge of Global Campaign, A.G. Diop, Epigraph, issue 2, page 6, 1999 The ILAE/IBE/WHO Global Campaign Against Epilepsy: Bringing epilepsy "Out of the Shadows", E.H. Reynolds, Ep & Behavior;1 S3-S8, 2000 A Visit to Kyrgyzstan,

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P. Wolf, J. Bowis, Int. Epilepsy News, issue 138, page 4,March 2000 Welcome to Epilepsy Matters, D. Ewles, Epilepsy Matters (Newsletter Canadian Alliance) vol.1, no.1, page 2, 2000 The Global Campaign Against Epilepsy: Bringing epilepsy out of the shadows, L. Prilipko, WHO Mental Health Bulletin, no.6, page 1/2,March 2000 The ILAE/IBE/WHO Global Campaign Against Epilepsy: an IBE perspective, H.M. de Boer, Int. Epilepsy News, issue no. 139, page 16, June 2000 The ILAE/IBE/WHO Global Campaign Against Epilepsy, H.M. de Boer,Int. Epilepsy News, issue no.140, page 15, September 2000 September 9th becomes a landmark for people in Latin America, M. Hills, Int. Epilepsy News, issue no. 141, page 4, December 2000 Reporte 1e Congreso Latinamericano de Epilepsia, C. Acevedo, Int. Epilepsy News, issue no. 141, page 6, December 2000, Hope and reality of epilepsy in the context of a developing country, A.G. Diop Int. Epilepsy News, issue no. 141, page 10, December 2000, 3rd Asian and Oceanian Congress (AOEO Congress), S. Jain, Int. Epilepsy News, issue no. 141, page 12, December 2000 H.M. de Boer, Epigraph, issue 2, page 6, 2000 Congreso Latinamericano de Epilepsia, M. Devilat, Revista Chilena de Epilepsia, 1, supp. December 2000 The Global Campaign Against Epilepsy in Europe, Eucare Report, page 7, 2000 Dakar conference adopts the African Declaration on Epilepsy as Global Campaign Against Epilepsy is launched in Africa, WHO Mental Health Bulletin, no. 7, September 2000 Medical and surgical strategies for epilepsy care in developing countries, A. Palmini, Epilepsia 41 suppl.4: S10-7, 2000; Out of the Shadows, Epilepsy Today, issue no. 52, page 5, September 2000 Bringing epilepsy out of the shadows, Lummina (Epilepsy Canada), vol.18 no.1,page 2, Spring 2000 Tag der Epilepsie, Einfalle, A4036 no. 74, , page 8, 2000 Den globale epilepsikampanjen Epilepsy out of the Shadows,

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E.H. Johnsen Epilepsi Nytt, no.3, page 2, 2000, Abstracts from the 24th International Epilepsy Congress, Buenos Aires, May 13-18 2001. Post Main Session D: Public Health Issues and Prevention of Epilepsy – “The Global Campaign, What Next?”, HM de Boer, Epilepsia, Volume 42, Suppl. 2, 2000 Epilepsy, epidemiology, etiology and prognosis Fact Sheet no 165, World Health Organization, Geneva, Switzerland. Revised 2001 Social Consequences and Economic Aspects Fact Sheet no 166, World Health Organization, Geneva, Switzerland. Revised 2001 Epilepsy; Scientific and Medical Advances Fact Sheet no 167, World Health Organization, Geneva, Switzerland. Revised 2001 Epilepsy: a Historical Overview Fact Sheet no 168, World Health Organization, Geneva, Switzerland. Revised 2001 News from the Epilepsy Support Association of Ethiopia, Z. Gedlie, Int. Epilepsy News, issue no. 142, page 23, March 2001 Epilepsy 2000 - Out of the Shadows, K. Pahl, Int. Epilepsy News, issue no. 142, page 24, March 2001 The Global Campaign Against Epilepsy. An update on the progress of the campaign, Aufruf zum Handeln Epilepsy out of the Shadows, D.Glgag, ParEpi info, no. 87/2, 2001 Bringing Epilepsy "Out of the Shadows", Epilepsy News, issue 12, page 1, Spring 2001 ILAE/IBE/WHO Global Campaign Against Epilepsy: Annual Report 2000 Launch of phase II of the WHO/ILAE/IBE Global Campaign against Epilepsy: Out of the Shadows, L. Prilipko, WHO Mental Health Bulletin, no 9, March 2001

Managing epilepsy at primary care level: a demonstration project in China, L. Prilipko, WHO Mental Health Bulletin, no. 9, March 2001 Epilepsy: From prejudice to hope in WHO's South-East Asian Region, WHO Mental Health Bulletin no. 10, June 2001 European White Paper on Epilepsy and call to action, L. Prilipko, WHO Mental Health Bulletin no.10, June 2001 Progress in the epilepsy demonstration project in China,

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L. Prilipko, WHO Mental Health Bulletin, no.10, June 2001 Consultative Meeting on the Implementation of the Global Campaign against Epilepsy (GCAE) in the African Region L.L. Prilipko, C. Mandlhate, K. Pahl, H.M. de Boer. Internaitonal Epilepsy News Number 143, June 2001

ILAE/IBE/WHO GCAE, Bringing epilepsy out of the shadows. An introduction to the Global Campaign and its Demonstration Projects (15-page brochure) 2001 ILAE/IBE/WHO Global Campaign Against Epilepsy. Launch of the second phase of the GCAE in Geneva on Feb12, 2001, G.H. Brundtland, EPICADEC, News no. 17, April 2001 ILAE/IBE/WHO Global Campaign "Out of the Shadows": global and regional developments, E.H. Reynolds, Epilepsia (Aug: 42(8): 1094-1100, 2001 The treatment of epilepsy in developing countries: where do we go from here? R.A. Scott, S.D. Lhatoo, J.W. Sander, Bull World Health Organ; 79(4):344-51, 2001 The Wife of a Bicycle Mechanic, WHO Feature Story no. 199, 2001 ILAE/IBE/WHO Global Campaign Against Epilepsy, Annual Report 2001 WHO: Epilepsy Campaign, FIP News (Int. Pharmacy Newsletter for FIP Ordinary), vol.2, no.3, page 7, March 2001 ILAE/IBE/WHO Global Campaign Against Epilepsy, WHO booklet From Prejudice to Hope, SEA/Ment/115, page 58-60, 2001 ILAE Commission on the Developing World, The treatment gap in epilepsy: the current situation and ways forward, H. Meinardi, R.A. Scott, R. Reis, J.W. Sander, Epilepsia Jan 42(1);136-49, 2001 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE June 2001 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE August 2001 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE October 2001 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE

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November 2001 Ut ur skuggorna, Epilepsia Svenska, 32, no.1, page 12, 2002 Out of the Shadows: Den globale epilepsikampanjen, Epilepsi Nytt, 27, no.1, page 9, 2002 WHO and Civil Society: Linking for better health. Civil Society Initiative. External Relations “Promoting public health campaigns” adapted from paper “ILAE/IBE/WHO collaboration” June 2002, HM de Boer, LL Prilipko WHO/CSI/2002/DP1 The Global Campaign Against Epilepsy, Editorial: B. Kies, Epicadec News, no. 19, July 2002 Campanha Global contra Epilepsia, HM de Boer, L Prilipko. Neurosciências Epilepsia no. 34, Julho de 2002. Epilepsy in the World, Launch of the Second Phase of the ILAE/IBE/WHO Global Campaign Against Epilepsy, ed. Edward H. Reynolds Epilepsia: volume 43, supplement 6, 2002. “Out of the Shadows: A Global Campaign Against Epilepsy” H.M. de Boer in Epilepsy in the World, Launch of the Second Phase of the ILAE/IBE/WHO Global Campaign Against Epilepsy, ed. Edward H. Reynolds Epilepsia: volume 43, supplement 6, p7-8. 2002. Global Campaign Against Epilepsy, Brochure WHO/NMH/MSD/02.2 Dept. Of Mental Health and Substance Dependence, 2002 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE, June, 2002 ILAE/IBE/WHO Global Campaign Against Epilepsy, Annual Report 2002 Epilepsy. A manual for medical and clinical officers in Africa, P.A. Dekker ILAE/IBE/WHO GCAE secretariat, 2002 Zambia celebrates the Global Campaign Betty B. Nsachilwa International Epilepsy News Number 3, 2003 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE December 2002 Campanha Global Epilepsia Fora das Sombras - Projecto Demonstrativo Brasileiro, Noticias Sem Crise, vol. 4, supp.1, page 3, 2003 Comite internacional atesta projecto brasileiro, L. Sander, Sem Crise, vol.4, page 9, 2003

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Campanha Global no Rumo Certo, L.. Prilipko, Sem Crise, vol.4, page 10, 2003 The Global Campaign Against Epilepsy in Africa, A.G. Diop, H.M. de Boer, C. Mandlhate, L. Prilipko, H. Meinardi Acta Tropica, 87 149-159, 2003 ILAE/IBE/WHO Global Campaign Against Epilepsy and its Demonstration Projects A.G. Diop, H. Meinardi, L. Prilipko, H. De Boer, J.W.. Sander, WHO Bulletin 2003 ????? National Demonstration Project on Epilepsy in Brazil, L.M. Li, J.W. Sander, Arq Neuropsiquiatr Mar;61(1) 153-6, 2003 Bringing Epilepsy "Out of the Shadows" in China, WHO Year in Review, 2003 Bringing epilepsy out of the shadows Katherine Uraneck with contributions for content from HM de Boer Pathways (Novartis), Volume 4, number 1, January/March 2003 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE April 2003 The Global Campaign Against Epilepsy as a model for raising awareness, HM de Boer. Epilepsia, vol. 44, suppl. 8, 2003 The Global Campaign at a glance: A Progress Report, H.M. de Boer, J. Engel Jr., L.L. Prilipko. Epilepsia, vol. 44, suppl. 8, 2003 The African Commission and its links with the ILAE/IBE/WHO Global Campaign Against Epilepsy H.M. de Boer. Epilepsia, vol. 44, suppl. 8, 2003 ILAE/IBE/WHO Global Campaign Against Epilepsy, Annual Report 2003 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE September 2003 The prevalence and treatment gap in epilepsy in China. An ILAE/IBE/WHO Study, W.Z. Wang, J.Z. Wu, D.S. Wag, X.Y. Dai, B. Yang, T.P. Wang, C.L. Yuan, R.A. Scott, L.L. Prilipko, H.M. de Boer, J.W. Sander, Neurology 60: 1544-1545, 2003; Bringing epilepsy out of the shadows J. Engel, Jr., Neurology,;60:1412, 2003 Activities of the ILAE/IBE/WHO Global Campaign H.M. de Boer, J. Engel jr., L. Prilipko. Epigraph 2003 Meeting with WHO Assistant Director General H.M. de Boer. International Epilepsy News Issue 1, p. 6-7. 2004

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L.M. Li, P.T. Fernandes, S. Mory, A.L. Noronha, H.M. de Boer, J. Espindola, C. Miranda, J.W. Sander, L. Prilipko, Rev Panam Salud Publica Oct-Nov;18(4-5):296-302, 2005 Epilepsy and social identity: the stigma of a chronic neurological disorder, Jacoby, D. Snape, G.A. Baker Lancet Neurol ; 4: 171-78, 2005 Developing approaches to reducing stigma of epilepsy: Findings from a rapid appraisal of epilepsy care in Vietnam, T.V. Dang, H.N. Than, W. Wang, J. Qu, C. Begley, R. Reis, H.M. de Boer, L. Prilipko, D.W. Chadwick, G.A. Baker, A. Jacoby Epilepsia, vol.46, suppl.6, 2005 Developing approaches to reducing stigma of epilepsy: Findings from a rapid appraisal of epilepsy care in China, A. Jacoby, W. Wang, J. Wu, T.V. Dan, H.N. Thanh, C. Begley, R. Reis, H. De Boer, L. Prilipko, D. Chadwick, G. Baker, Epilepsia, vol.46, suppl.6, 73, 2005, Epilepsy care in rural Zimbabwe: A Global Campaign Against Epilepsy project, J. Mielke, C. Madzokere, Epilepsia, vol.46, suppl.6, 347, 2005 Knowledge, attitudes and practices of the health personnel towards epilepsy in Pikine, K.Toure, B. Sessouma, F. Sene/diouf, A. Thiam, A.G. Diop, M.M. Ndiye, I.P. Ndiaye, Epilepsia, vol.46, suppl.6, 190, 2005 Evaluation of the assumption of responsibility and the quality of services offered to epilepsy patients in the Pikine medical district, A.D. Sow, N.F. Ndoye, B. Sessuma, K. Toure, A.G. Diop, P. Ndiaye, F. Sene, M. Ndiaye, Epilepsia, 46, suppl.6, 183, 2005 Prevalence of epilepsy its treatment gap and knowledge, attitude and practice of its population in sub-urban Senegal an ILAE/IBE/WHO study, N.F. Ndoye, A.D. Sow, Q.G. Diop, B. Sessouma, F. Sene-Diouf, L. Boissy, I. Wone, K. Toure, M. Ndiaye, P. Ndiaye, H. de Boer, J. Engel, C. Mandlhate, H. Meinardi, L. Prilipko, J.W.A.S. Sander, Seizure, 14, 106-111, 2005 Assessing the disease burden due to epilepsy by disability adjusted life year in rural China, D. Ding, Z. Hong, W. Wang, J. Wu, H.M. de Boer, L. Prilipko, J.W. Sander, Epilepsia 47(12): 2032-2037, 2006 Premature mortality in people with epilepsy in rural China: a prospective study, D. Ding, W. Wang, J. Wu, G. Ma, X. Dai, B. Yang, T. Wang, C. Yuan, Z. Hong, H.M de Boer, L. Prilipko, J.W. Sander. Lancet Neurology: 5: 823-827, 2006 Epilepsy care in the world: Results of an ILAE/IBE/WHO Global Campaign Against Epilepsy Survey,

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T. Dua, H.M. de Boer, L.L. Prilipko, S. Saxena Epilepsia 47(7) 1225-1231, 2006 Epilepsy in North America. A report prepared under the auspices of the GCAE/IBE/ILAE/WHO, W.H. Theodore, Susan S. Spencer, Samuel Wiebe, John T. Langfitt, Amza Ali et al Epilepsia 47(10) 1700-22, 2006 Efficacy assessment of phenobarbital in epilepsy: a large community-based intervention trial in rural China, W.Z. Wang, J.Z. Wu, G.Y. Ma, X.Y. Dai, B. Yang, T.P. Wang, C.L. Yuan, Z. Hong, G.S. Bell, L. Prilipko, H.M. de Boer, J.W. Sander,Lancet Neurol; 5: 46-52,2006 Prevalence and pattern of epilepsy treatment in different socioeconomic classes in Brazil, A.L.A. Noronha, M.A. Borges, L.H.N. Marques, D.M.T. Zanetta, P.T. Fernandes, H. de Boer, J. Espindola, C.T. Miranda, L. Prilipko, G.S. Bell, J.W. Sander, L.M. Li, Epilepsia 48(5): 880-885, 2007 National demonstration project in Brazil Global Campaign Against Epilepsy: Out of the Shadows, J.W. Sander, P.T. Fernandes H.M. de Boer, L. Prilipko, Arquivos de Neuro-Psiquiatria, vol.65, suppl.1, Marco 2007 Demonstration project on epilepsy in Brazil. Situation assessment, L.M. Li, P.T. Fernandes, A.L.A. Noronha, L.H. Marques, M.A. Borges, F. Cendes, C.A.M. Guerreiro, D.M.T. Zanetta, H. de Boer, J. Espindola, C.T. Miranda, L. Prilipko, J.W. Sander, Arq Neuropsiquiatr ; 65 suppl.1: 5-13, 2007 Demonstration Project on Epilepsy in Brazil: outcome assessment Li M. Li, Paula T. Fernandes, Ana L.A. Noronha, Lucia H.N. Marques, Moacir A. Borges, Karina Borges, Fernando Cendes, Carlos A.M. Guerreiro, Dirce M.T. Zanetta, Hanneke M. de Boer, Javier Espindola, Claudio T. Miranda, Leonid Prilipko, Josemir W. Sander, Arquivos de NeuroPsiquiqtria, Vol 65, Supplemento 1, June 2007 National Epilepsy Association in Brazil, P.T. Fernandes, A.L.A. Noronha, J.W. Sander, L.M Li Arq Neuropsiquiatr;65(suppl.1):54-56, 2007 Demonstration project on epilepsy in Brazil. WHO/ILAE/IBE Global Campaign Against Epilepsy: A Foreword, L.M. Li, P.T. Fernandes, P.C.B. Salgado, H.M. de Boer, L. Prilipko, J.W. Sander, Arq Neuropsiquiatr;65(suppl.1), page 1-4, 2007 Epilepsy stigma perception in an urban area of a limited-resource country, P.T. Fernandes, P.C.B. Salgado, A.L.A. Noronha, H.M. de Boer, L. Prilipko, J.W. Sander, L.M. Li, Ep & Behavior 11, 25-32, 2007

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Teachers perception about epilepsy Paula T. Fernandes, Ana L.A. Noronha, Ulisses Araújo, Paula Cabral, Ricardo Pataro, Hanneke M. De Boer, Leonid Prilipko, Josemir W. Sander, Li M. Li, Arquivos de Neuro-Psiquiqtria, Vol

65, Supplemento 1, June 2007 New epilepsy legislation in Colombia!, H. de Boer, Int. Epilepsy News, issue 4, 2007, page 18 IBE Annual Report 2007, ILAE/IBE/WHO Global Campaign Against Epilepsy, page 8 Brainwave, the Irish Epilepsy Association, marks Brain Awareness Week in Ireland and celebrates 10 years of the Global Campaign Against Epilepsy, Int. Epilepsy News, issue no. 1, 2008, page 9 Meanings of epilepsy in its sociocultural context and implications for stigma: findings from ethnographic studies in local communities in China and Vietnam Jacoby, W. Wang, T.D. Vu, J. Wu, D. Snape, N. Aydemir, J. Parr, R. Reis, C. Begley, H. de Boer, L. Prilipko, G. Baker,, Epilepsy Behav. Feb 12(2):286-97, 2008 Primary care treatment of epilepsy with phenobarbital in rural China: cost-outcome analysis from the WHO/ILAE/IBE Global Campaign Against Epilepsy Demonstration Project, D. Ding, Z. Hong, G.S. Chen, X.Y. Dai, J.Z. Wu, W.Z. Wang, H.M. de Boer, J.W. Sander, L. Prilipko, D. Chisholm, Epilepsia, , Mar;49(3)535-9, 2008 IBE/ILAE/WHO Global Campaign Against Epilepsy: "Out of the Shadows".Asst. Dir. of the WHO meets with IBE President, Philip Lee, Int. Epilepsy News, issue 3, page 4, 2008 Reporte sobre meeting OMS/OPS en Honduras, C. Acevedo, Int. Epilepsy News, issue 3, page 5, 2008 Brainwave, the Irish Epilepsy Association, marks Brain Awareness Week in Ireland and celebrates 10 years of the Global Campaign Against Epilepsy, Epilepsy India, issue 4, 2008, page 14 Epilepsia, Vol. 49(3): 535-539, 2008 “Primary Care Treatment of Epilepsy with Phenobarbital in Rural China: Cost-outcome Analysis from the WHO/ILAE Global Campaign Against Epilepsy Demonstration Project”, Ding Ding, Gui-sheng Chen, Jian-zhong Wu, WenzhiWang, Zhen Hong, Xiu-ying Dai, Hanneke M. De Boer, Leonid Prilipko, Josemir W Sander, Dan Chisholm Bull of the World Health Organization 2008; 86:964-969

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“Global campaign against epilepsy: assessment of a demonstration project in Rural China”. Wang W, Wu J, Dai X, Ma G, Yang B, Wang T, Yuan C, Ding D, Hong Z, Kwan P, Bell GS, Prilipko LL, de Boer HM, Sander JW. Epilepsy Behav. 2009; PubMed PMID: 19635685 “Changes in knowledge, attitude, and practice of people with epilepsy and their families after an intervention in rural China”. Wang W, Zhao D, Wu J, Wang T, Dai X, Ma G, Yang B, Yuan C, Bell GS, de Boer HM, Prilipko LL, Sander JW. World Neurology, Editor-in-Chief: Dr. Mark Hallett. . Elsevier Science BV, Amsterdam, The Netherlands, December 2010 “When it comes to epilepsy and epilepsy care: “every country is a developing country” de Boer HM The Atlas of Epilepsies, Springer-Verlag London Limited 2010 “The Epilepsy Treatment Gap: industrialised and resource-poor countries” Avanzini G,. de Boer HM. Chapter 210, The Epilepsy Treatment Gap, Volume 3, Chapter 210, p1399-1411, Section 15, “Stigma and Discrimination in Epilepsy” Valeta Th, de Boer HM. Volume 3, Chapter 201, p1363 – 1366 Section Editor, Thalia Valeta, Editor-in-Chief, CP Panayiotopoulos, Seizure. 2010; Vol;.19: Pages: 630-6 “Epilepsy stigma: Moving from a global problem to global solutions” de Boer HM Epilepsy Research. 2012; Vol. 98: Pages123-9 “The prevalence and treatment gap of epilepsy in Tbilisi, Georgia” (Reference: EPIRES4606 Giorgi Lomidze, Sofia Kasradze, , David Kvernadze, Natela Okujava, , Otar Toidze, Hanneke M. de Boer, , Tarun Dua, , Josemir W. Sander, Journal of Neurology, Neurosurgery & Psychiatry (JNNP).. 2012; Vol. 83: Pages: 1139-44 “Cognitive and mood effects of phenobarbital treatment in people with epilepsy in rural China: a prospective study” Ding Ding1, Qing Zhang2, Dong Zhou3, Weihong Lin4, Qingsheng Wu5, Jixin Sun6, Qianhua Zhao1, Peimin Yu1, Wenzhi Wang7, Jianzhong Wu7, Gail S. Bell8, Patrick Kwan9, Hanneke M. de Boer10, Shichuo Li11, Pamela J. Thompson8, Zhen Hong1, Josemir W. Sander8,10 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE August 2011 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE

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March 2012 Out of the Shadows, Newsletter of the ILAE/IBE/WHO GCAE December 2012 Epilepsia. 2013; Vol. 54, Pages:537-542 Long term outcome of phenobarbital treatment for epilepsy in rural China: A prospective cohort study Patrick Kwana,1,2, Wen-Zhi Wanga,3, Jian-Zhong Wu3, Shi-Chuo Li4, Hong-Chao Yang4, Ding Ding5, Zhen Hong5, Xiu-Ying Dai6, Bing Yang7, Tai-Ping Wang8, Cheng-Lin Yuan9, Guang-Yu Ma10, Hanneke M de Boer11, Josemir W Sander11,12 Epilepsy and Behavior, Volume 27, Issue 2, May 2013, Pages 315–318 “Knowledge, attitudes, and stigma towards epilepsy in different walks of life: A study in Georgia” Nino Gzirishvili, Sofia Kasradze, Giorgi Lomidze, Natela Okujavab, Otar Toidze, Hanneke M. de Boer, Josemir W. Sander Current Opinion in Neurology, Volume 26, Issue 2, April 2013, Pages 219-225 ILAE/IBE/WHO Global Campaign Against Epilepsy: a partnership that works Hanneke M. de Boer, Solomon L. Moshé

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