Blog Archives

Welcome to our 78th newsletter. Our health professionals and researchers, who are on the frontline at the Pitié-Salpêtrière Hospital in Paris, are mobilising to help patients. All the health professionals and care practitioners in the Neuro-Myology Department have met to identify, as a priority, the most fragile neuromuscular patients in order to ensure their continued … [Read more]

Welcome to the first issue of our newsletter for the new year! The counter of the 2019 Telethon, which took place on December 6 and 7, displays 74 569 212 euros. A result that will help multiply victories ! “The 2019 Telethon is that of promises kept. Thirty years ago, there was nothing. Most rare … [Read more]

Welcome to the 76th issue of our newsletter! In this edition, you will find an interview with Bertrand Fontaine, head of the service of neuromyology at the Salpetriere hospital created last July which takes over the activity of the Clinical Unit of Neuromuscular Pathology, the historical consultation of the Institute of Myology. In a few … [Read more]

Welcome to the latest issue of our newsletter! This year, the popular French actor, film director, screenwriter and producer Jean-Paul Rouve will be the ambassador of the Telethon. Join us on December 6 and 7, live on France Télévisions channels and everywhere in France. A Telethon under the banner of victories. The revolution of gene … [Read more]

Welcome to the 74th issue of our newsletter! Odile Boesflug-Tanguy, neuropediatrician and researcher, has taken the direction of I-Motion since last July 16 following the departure of Laurent Servais to whom we wish all success and whom we thank for all that he built at l’Institut de Myologie with his team. We also wish Teresa … [Read more]

Welcome to our 73rd newsletter. A historic first: on May 24, the Food and Drug Administration approved Zolgensma®, a gene therapy drug for the treatment of spinal muscular atrophy. This is the first gene therapy authorized for a neuromuscular disease. In France, an agreement was reached between the Biogen laboratory and the French state that … [Read more]

Welcome to our 72nd newsletter! The international congress Myology 2019 officially opens next Monday at Bordeaux and will attend more than 800 experts coming from 35 countries. Each day, you will find on the website of the institute a report of sessions of the day before and interviews with speakers. Until then, please find the … [Read more]

Welcome to the first issue of our newsletter for the new year! Victory was the theme of the 2018 Telethon and the Institute of Myology can be proud of its own victories, which undoubtedly contribute to the whole. The year 2018 has been rich in progress and the institute is proud of every step taken … [Read more]

Welcome to the 70th issue of our newsletter! On December 7th, Telethon 2018 will begin and will be diffused on France 2. This Telethon will be marked by many victories including the first gene therapy results for neuromuscular diseases. Children who have not been able to move, sit up, raise their arms or catch things … [Read more]

After a long break for the summer holidays, welcome to the latest issue of our newsletter! The Great Family Celebration was an opportunity to look back on 60 years of struggles and victories, and to celebrate advances in research, rights and support for the patients. The kick-off of the Telethon 2018 has also been given: … [Read more]