European Organisation for Rare Diseases
The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on rare diseases and commercial development of orphan drugs. EURORDIS is a dedicated to improving the quality of life of all people living with rare diseases in Europe. It was founded in 1997; it is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, corporate foundations and the health industry.
There are an estimated 20–30 million people living with rare diseases in Europe alone, and an estimated 6,000 rare diseases. EURORDIS represents more than 700 rare disease organizations in 63 different countries (of which 26 are EU Member States), covering more than 2,000 rare diseases.
EURORDIS was the founding partner of Rare Disease Day in 2008 and remains its lead coordinator.
National organizations with a similar focus include National Organization for Rare Disorders (NORD) in the United States, Canadian Organization for Rare Disorders (CORD) in Canada, Allianz Chronischer Seltener Erkrankungen (ACHSE) in Germany, and Federación Española de Enfermedades Raras (FEDER) in Spain.
- Nogales Espert A (2004). "[Rare diseases: a new chapter in medicine]". An R Acad Nac Med (Madr) (in Spanish). 121 (1): 139–51; discussion 151–5. PMID 15553406.
- Houyez F (2004). "Active involvement of patients in drug research, evaluation, and commercialization: European perspective". J Ambul Care Manage. 27 (2): 139–45. PMID 15069992.
- EURORDIS official website
- EURORDIS and NORD project to develop Online Patient Communities
- Global website for Rare Disease Day information and activities