Search

September 15, 2024 marks the 4th International Myotonic Dystrophies Awareness Day. This event, supported by over 60 organizations worldwide, aims to raise awareness among the general public, healthcare professionals and political decision-makers of the need to improve diagnosis, care and support for patients, and to speed up the development of medicines. The AFM-Telethon, which brings together French patients affected by these diseases, is committed to speeding up research. This new edition focuses on two specific areas in particular: raising awareness and educating clinical care teams, and preparing participants for clinical trials.

World Duchenne Muscular Dystrophy Day provides an opportunity to note the acceleration in the development of innovative therapies for this neuromuscular disease, which is the most common in children. Gene therapy is one of the most promising avenues. Genethon, the AFM-Telethon laboratory, is currently developing a drug candidate which has demonstrated its efficacy in the first patients to be treated. Discover our video of patient testimonials ! 

On Friday 31 August, 56 people from the Danish association MuskelsVindfonden, the Danish equivalent of AFM-Téléthon, visited the Institut de Myologie.

"Cure through Innovation" is a booklet that sums up the main actions and missions of the AFM-Téléthon association, as well as its key figures for 2023. The July 2024 edition has just been published!

On June 20, World FSHD Day reminds us of the importance of raising awareness and supporting research into facioscapulohumeral muscular dystrophy. Committed to the fight against FSHD, the AFM-Téléthon is making available a series of publications to enlight the advances in research by it, but also by many other neuromuscular diseases. 

While it is customary for the heart of solidarity to beat for the Telethon on the first weekend in December, this year, exceptionally, the Telethon will be held on November 29 and 30, to make way for the ceremony to reopen the Cathedral of Notre-Dame de Paris.
 

The initial results of Genethon's gene therapy trial for Duchenne muscular dystrophy were presented on Tuesday 23 April at the Myology 2024 congress in Paris.

92,905,533 is the final amount raised by the Telethon held on 8 and 9 December 2023. This exceptional result bears witness to the unfailing mobilization of millions of donors, volunteers, and partners throughout France and abroad.

The AFM-Téléthon sends you its best wishes for the New Year and hopes that 2024 will be full of scientific breakthroughs, small and large joys, and shared victories!

The Telethon 2023 ended on a high of €80,671,222, which shows the confidence and exceptional mobilization of donors and volunteers for this year's event, rich in victories against disease and promises for all those waiting for the diagnosis and treatment that will change their lives. We must not give up. 

Finding treatments for neuromuscular diseases by combining artificial intelligence, stem cells and pharmacological screening is the aim of the new DREAMS research consortium, coordinated by I-Stem. An unprecedented project!

The 2024 edition of the International Consortium on Myotonic Dystrophy (IDMC-14) will take place in Nijmegen from 9 to 13 April 2024. This is an opportunity to learn, share and network thanks to the presence of scientists, clinicians, patients and professionals from the pharmaceutical industry. 

A gene therapy developed at Genethon by Ana Buj Bello's team is proving effective in a rare and very severe muscle disease: myotubular myopathy. Review of the results published online in The Lancet Neurology on November 15. 

The 8th edition of international congress dedicated to neuromuscular science, MYOLOGY 2024, will take place in Paris from 22 to 25 April 2024. Registration and call for abstract are now open : don't miss an opportunity to showcase your latest study to an international community of scientists and healthcare professionals. The deadline for abstract submission has been extended until November 30, 2023 - 11:59 pm.