Search

Find here all the latest news on AFM-Telethon and rare diseases.

Find here AFM-Telethon's latest news, publications and press releases.

AFM-Telethon takes action in various fields, from research, development and bioproduction of innovative therapies for rare diseases to care for patients and their relatives. The association also advocates to defend patients’ rights and takes part in international activities. Discover our actions to fight disease.

Take part in the Telethon to give AFM-Telethon the means to conquer the disease. Discover how to participate and join us !

Discover the different ways to give to support AFM-Telethon and families' fight against rare diseases.

The Telethon, it’s a TV program combined with an exceptional momentum that gathers thousands of participants throughout France and overseas departments, that gives AFM-Telethon the means to continue its fight against disease.

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

Myobase is a document portal dedicated to neuromuscular diseases and motor disabilities, published by the documentation department at the French Muscular Dystrophy Association. It gives access to over 60,000 documents. 

Thanks to your donations, research is moving forwards, the first treatments have arrived and care and support for people affected by rare diseases has improved. Your donations drive the victories of AFM-Telethon!  

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.  

From genome maps to the discovery of the genes responsible for diseases, an entire sector of world medicine has made a spectacular leap forward, thanks to the determination of AFM-Telethon families, and the momentum of the Telethon.  

€ 96, 553, 593 : this is the final amount raised during the Telethon held on 29 and 30 November 2024. This result reflects an extraordinary outpouring of solidarity, driven by millions of donors, volunteers and partners who have stood by families in their fight for nearly 40 years. It is also the outcome of the outstanding commitment of our patron, Mika, and the many presenters and professionals from France Télévisions, who powerfully amplified the voices of families and researchers united in their determination to defeat the disease.

A joint study conducted by I-Stem, Genethon and the Institute of Myology reveals the positive effects of two drugs—saracatinib and bazedoxifene—on muscle cell models of dysferlin-related limb-girdle muscular dystrophy type R2. This opens up a novel research avenue.

Thanks to the financial support of the AFM-Téléthon, a decisive step has just been taken in the fight against sickle cell disease. In collaboration with AP-HP, Institut Imagine and SK pharmteco, the AFM- Telethon will enable the production of lentiviral vectors for the development of a gene therapy clinical trial. This represents hope for the 5 million patients worldwide affected by this incurable blood disease. 

AFM-Téléthon and The Muscular Dystrophy Association (MDA)  are proud to announce the awarding of two cutting-edge research grants to accelerate the development of treatments for mitochondrial myopathies and amyotrophic lateral sclerosis (ALS).