Founded in 1980, the French Ataxia Association of Friedreich has 870 members and more than 400 ataxic people. Main goals :
• Help the research, by participating in its financing and by collaborating with certain studies, with the expertise of the Scientific Council.
• Promote information on the disease and follow-up with caregivers, with the Medical and Paramedical Council (edition of recommendations).
• Create links through meetings and events.
• Accompany sick and families in their daily lives by listening, information and contacts via the quarterly magazine Espoir, the site, Facebook, the forum, etc ...
AFAF has developed two services with professionals: the remote psychological support service and the social orientation service. A big job of research of communication tools starts in 2019.
AFAF collaborates in international research projects.
AFAF has been working for 14 years with CSC and ASL, associations of related diseases, and is an active member of Alliance Rare Diseases, EUROATAXIA, EURORDIS and the BRAIN-TEAM neurological rare diseases.