Institut de Myologie

The Institute of Myology was initiated by a group of leaders, patients and families from the French Muscular Dystrophy Association (Association Française contre les Myopathies, AFM) who wished to establish a point of reference where specialised consultations, fundamental and clinical research teams and teaching on muscle and muscle diseases would all be grouped together in a public hospital. The project took shape through AFM’s partnerships with the Assistance Publique-Hôpitaux de Paris (AP-HP), National Institute of Health and Medical Research (Institut National pour la Santé et la Recherche Médicale, Inserm), the Université Paris VI and the Nuclear Energy Commission (Commissariat à l’Energie Atomique, CEA).

Mission

To reach this objective, the Institute of Myology has set itself the following missions:to bring research, clinical activities and teaching together in the same placeto gather performing means of investigation for diagnosis and careto create a centre of expertise and a point of reference on muscle and muscle diseasesto set up coordinated clinical research programsto participate in the development of new therapeuticsto provide families with adapted reception, support and medical expertiseto train and inform in order to increase understanding and public awareness of these diseases.

Activities

The general structure of the Institute of Myology is under the medical and scientific direction of Dr Thomas Voit. AFM coordinates the structure and appoints Stéphane Roques, the Secretary- General. Directly attached to AFM’s general management, the Institute of Myology is subjected to a separate budget presentation at AFM’s Board of Directors. Apart from its coordinating and teaching activities, the Institute is engaged in 5 main areas of activities:

UMR 787 – Group Myology
Clinical Unit of Neuromuscular Pathology
Laboratory of Neuromuscular Physiology
Nuclear Magnetic Resonance Laboratory (NMR)
UMR 974 – Therapies of the disorders of striated muscle
Neuromuscular Morphology Unit.

Associated Contacts

Name: Claire Wary

Name: Gisèle Bonne
Email Address: g.bonne@institut-myologie.org

Gisèle identified the first mutations in the LMNA gene encoding the lamins A/C, to be responsible for the aurosomal dominant forms of Emery-Dri …

Name: J. Andoni Urtizberea
Email Address: andoni.urtizberea@gmail.com

Dr Jon Andoni Urtizberea is head of the internationally renowned Paris Summer School of Myology and a consultant at the neuromuscular reference centre …