Germany: ACHSE (The German Alliance for Chronic Rare Diseases)

Descripción de la práctica:
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. ACHSE is forty-seven members strong. Some of its members include the German Association for Muscular Dystrophy, the German Ehlers-Danlos Initiative, the Marfan Association, and the Cystic Fibrosis Association. ACHSE has set itself ambitious goals: increase knowledge on rare diseases; support the creation and development of cross-regional patient organisations; represent the interests of people affected by rare diseases; increase the knowledge of medical practitioners about rare diseases and foster information exchange with specialists; develop cooperation between doctors, the pharmaceutical industry and patient groups; and increase research on orphan drugs.

Otra información de interés:
Fax: 49 30 30201599