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The governance

More than anything, AFM-Téléthon is an association composed of patients affected by a disease. These people and their families have a central role in the system. Families are very often asked about their needs and, for the most part, they design the solutions together with professionals.

Illustration for article: The Board of Directors: Patients’ power

The Board of Directors: Patients’ power

The French Muscular Dystrophy Association (AFM-Téléthon) is an association of activists directly concerned by neuromuscular diseases. Patients and their families decide on AFM-Téléthon’ strategy.
Illustration for article: The Scientific council: researchers to advise us

The Scientific council: researchers to advise us

Since 1981, even before the first Telethon, AFM-Téléthon set up a Scientific Council consisting of independent experts, to direct its policy for research into rare diseases. In 2016, Dr Odile Boespflug-Tanguy, Inserm researcher, chaired the 8th Scientific Council, composed of 92 international experts in neuromuscular dystrophy, rare diseases and biotherapies.
Illustration for article: The finance committee: 7 independent advisers

The finance committee: 7 independent advisers

Thoroughness and transparency are two key values of AFM-Téléthon. These values guide its financial management. This is why AFM-Téléthon has set up a Financial Committee made up of seven independent, volunteer advisers.
Illustration for article: Laurence Tiennot-Herment, President of the AFM since 2003

Laurence Tiennot-Herment, President of the AFM since 2003

"I understood that you have to fight with the spirit of people who have nothing to lose. If you want to move mountains. It can be done.”