Press Releases :

FM’s new Scientific Council will meet for the first time on Friday 25 June at the Parc Floral in Paris. This 6th Scientific Council will be chaired by Dr Naomi Taylor, Research Director at INSERM and Immunologist at the Montpellier Institute of Molecular Genetics (IGMM).

Tomorrow, around thirty innovative biotherapy and genetic eye disease experts* will gather together at Généthon (Evry) to review, for the first time, the studies carried out so far as part of the Réseau Thérapie Génique Oculaire (R-TGO – Ocular Gene Therapy Network).

The expertise and know-how of Assistance Publique - Hôpitaux de Paris (Paris Public Hospitals) teams and the support of the Association Française contre les Myopathies (AFM – French Muscular Dystrophy Association) have led to a European marketing authorisation being granted for the drug Firdapse© (Amifampridine), used in the treatment of Lambert-Eaton myasthenic syndrome (LEMS).

€95, 200,117: the total raised by the 2009 23rd Telethon organised on 4-5 December by AFM and France Télévisions, with the support of radio stations from the Radio France group. The scale of this total in difficult economic times bears witness to the general public’s commitment to the concepts of solidarity and pushing one’s own boundaries promoted by AFM. It also represents the concerted efforts of one million donors, 200,000 volunteers and 5 million people taking part in almost 20,000 events, ranging from the most traditional to the outright crazy, in over 10,000 French towns and villages

Généthon, the not-for-profit biotherapy laboratory operated by the French Muscular Dystrophy Association (AFM) with funding from the country's annual Telethon*, has just obtained approval from the French and British health authorities for a Phase I/II clinical trial of gene therapy for a rare immunodeficiency, Wiskott-Aldrich syndrome (WAS). The Généthon-sponsored trial will be performed both in France (led by Professors Alain Fischer (1) and Marina Cavazzana-Calvo (2) at Necker Children's Hospital, Paris) and in the UK (led by Professor Adrian Thrasher at London's Great Ormond Street Hospital). With just a few days to go to Rare Disease Day 2010* (February 28th, with a focus on "Bridging Patients and Researchers”), initiation of this trial marks a new step towards curing rare diseases with innovative biotherapies.