GENETIC / RARE DISEASES /
EURORDIS (European Organisation for Rare Diseases) http://www.eurordis.org Chief Executive Officer: Yann le Cam
c/o Plateforme Maladies Rares 102 rue Didot 75014 Paris France
T: 0033-1-56-53-52-10 F: 0033-1-56-53-52-15 Email: eurordis@eurordis.org
A patient-driven alliance of patient organisations working in the area of rare diseases. Dedicated to improving the quality of life of Europeans living with rare diseases. Aims to build a strong pan-European community of rare-disease patient organisations and people living with rare diseases, and works to act as their voice at European level.
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EURORDIS is focusing on the challenges ahead—the need to make rare diseases a public-health priority, and the need for National Plans for Rare Diseases in every country in Europe.
Geographic remit: Europe. Annual funding / income (most recent): €2.1m (2008). Pharmaceutical funding: 23% of 2008 revenue from: Actelion OTL Pharma; Alexion Europe; Baxter International Foundation; CSL Behring; Drug Information Association (DIA); French Pharmaceutical Companies Association (LeeM); Genzyme; Novartis; Pharmion; Promocell; Shire; Sigma-Tau Pharmaceuticals; Swedish Orphan International. GSK points out that its 2008 donation of €15,000 represented 0.6% of the organisation’s revenue that year. Non-pharma funding: Association Française contre les Myopathies (AFM) (36% of 2008 revenue); European Commission (11% of 2008 revenue); Fonds Léa Rose; King Baudouin Foundation; Medtronic Foundation; Membership fees. Number of members: Pan-European member organisations and national patient associations (more than 300) from 29 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 17 full-time equivalent staff. Number of volunteers: 12-member Board of Directors, and at least 55 volunteer translators. Together, they represent 2.7 full-time equivalents. Affiliations: European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW
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