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FKRP Limb-girdle muscular dystrophy : 1st patient treated in the European gene therapy clinical trial

The AFM-Telethon and its laboratory Genethon are delighted with the treatment of the first patient included in the European gene therapy trial for limb-girdle muscular dystrophy linked to the FKRP gene (LGMD2I/R9). This is a major step, the result of 30 years of excellence in research led by Isabelle Richard, head of the Progressive Muscular … [Read more]

Myology 2022: Institute of Myology experts will highlight their last scientific results

During four days, from 12 to 15th of September, researchers and clinicians of the Institute of Myology will attend the seventh International Congress of Myology, organized by AFM-Téléthon. This renewed international congress brings together around 800 experts in the field of Myology and neuromuscular diseases from all over the world (35 countries). More than 70 … [Read more]

France revives positive European Momentum against Rare Diseases

It is a positive commitment, but France must set an example by perpetuating and amplifying a truly ambitious national policy. February 28 marked the 15th International Rare Diseases Day. On this occasion, thousands of initiatives – national, European and international – took place in more than 100 countries to bring visibility to the immense needs … [Read more]

A new approach to gene therapy for Steinert’s disease

The Denis Furling* team (Paris, France), in collaboration with the Nicolas Sergeant** team (Lille, France), has developed and tested a new approach to gene therapy, a so-called “decoy” approach, for Steinert’s disease or myotonic dystrophy type 1 (DM1). The strategy is based on the expression of modified proteins that will bind to the pathological expansions … [Read more]

Lower limb exoskeletons: 2 clinical studies starting at the Institute

The rare neuromuscular diseases are characterised, in particular, by a progressive loss of muscle strength. As a result, getting up, sitting down or going up stairs can quickly become difficult. This is why the Institute of Myology, a centre of expertise in the science and medicine of the muscle, has just launched two studies, whose … [Read more]

Hope, an exceptional dance gala for the benefit of research excellence

On October 21, at 8:30 p.m., the Casino de Paris will host an exceptional show for the benefit of the Institute of Myology, a research and care center of excellence created by the AFM-Telethon and dedicated to Muscle science and medicine.    At the initiative of Laura Arend, dancer and choreographer, and Charlotte Ranson, dancer … [Read more]

DMD: gene therapy clinical trial starting in France

A first patient with Duchenne muscular dystrophy has received a gene therapy treatment at I-Motion, the paediatric clinical platform for neuromuscular diseases, in the context of a clinical trial conducted by Généthon. A first decisive step! A young boy with Duchenne muscular dystrophy was treated with a gene therapy at I-Motion, in Paris. He is … [Read more]

Dr Emmanuelle Lagrue, MD-PhD, pediatric neurologist, joins Généthon and I-Motion

Dr Emmanuelle Lagrue, MD-PhD, pediatric neurologist, simultaneously joins Généthon, the AFM-Telethon laboratory dedicated to gene therapy, as Senior Medical Manager, and I-Motion, the pediatric clinical trials platform of the Institute of Myology, as Deputy Director. Holder of a university degree in pediatric neurology and a doctorate in Sciences, Dr Emmanuelle Lagrue multiplies expertises. After her pediatric … [Read more]

Experts from the Institute of Myology take the floor

Between 28 September and 2 October, the 25th International Annual Congress of the World Muscle Society, which brings together muscle experts from all over the world, will highlight the work of many researchers from the Institute of Myology, the centre of expertise on muscle and its diseases that was created by AFM-Telethon. From fundamental research … [Read more]

Martine Barkats and Maria Grazia Biferi awarded the Avi Kremer ALS Treatment Prize from Prize4Life for their gene therapy approach

Martine Barkats and Maria Grazia Biferi have received the Avi Kremer ALS Treatment Prize from Prize4Life, which is committed to the fight against Amyotrophic Lateral Sclerosis (ALS*) and awards $1 million to the winners. Within the Myology Research Centre (MRC) of the Institute of Myology, the team “CNS Gene Transfer & Biotherapy of Motor Neuron … [Read more]