EURORDIS (European Organization for Rare Diseases)

Descripción de la organización:
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, 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. EURORDIS represents more than 260 rare disease organisations in over 30 different countries, covering more than 1,000 rare diseases. It is therefore the voice of the 30 million patients affected by rare diseases throughout Europe. EURORDIS is a not-for-profit organisation with a stringent financial transparency policy and good governance practices.