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About us

AFM-Telethon is a patients' organisation fighting neuromuscular diseases, rare genetic disorders that kill muscle after muscle. Its primary goal : to conquer the disease.

AFM-Telethon's history : Yolaine de Kepper, first Chair of AFM-Telethon

Our history

The French Muscular Dystrophy Association (AFM-Telethon) is an association of activists, patients and parents of patients, affected by rare, progressive and significantly disabling genetic diseases, known as genetic neuromuscular diseases. It was created out of a conviction and a desire, to cure diseases that were long considered to be incurable. AFM-Telethon is also the Telethon, a fundraising event which brought rare diseases out of scientific and medical obscurity and triggered a three-fold revolution: genetic, social and medical.  

AFM-Telethon's missions : Cure, Care, Communicate

Our missions

Innovation in scientifical, medical, social and technological fields, AFM-Telethon is a pioneer in the research and support to improve patients’ lives. Three missions are at the heart of its action: Cure, Care, Communicate.

AFM-Telethon's fights for patients with a neuromuscular disease, rare disease and people with a disability

Our fights

AFM-Telethon has long struggled to defend the rights of patients, of people living with disabilities, and to obtain recognition for rare diseases. As a driver of research and innovation, it defends an ambitious national policy.  

AFM-Telethon's organization : Laurent Tiennot-Herment, Chair of AFM-Telethon

Our organization 

Committed to scientific research as well as to the support of patients and their families, AFM-Telethon acts independently, guided only by the urgency of the progressive disease, for the benefit of patients.  

vignette nos comptes couverture du rapport annuel 2021

Our accounts 

Transparent and meticulous management: in 2021, AFM-Telethon committed €80.8 M to its social missions, in addition to €4.9 M in advances and investment for the Cure mission.