The Institute of Myology project 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).
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 place
- to gather performing means of investigation for diagnosis and care
- to create a centre of expertise and a point of reference on muscle and muscle diseases
- to set up coordinated clinical research programs
- to participate in the development of new therapeutics
- to provide families with adapted reception, support and medical expertise
- to train and inform in order to increase understanding and public awareness of these diseases
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 :
- Myology Research Centre, UMR 974 UPMC- INSERM. CNRS FRE 3617
- Clinical Unit of Neuromuscular Pathology
- Laboratory of Neuromuscular Physiology
- Nuclear Magnetic Resonance Laboratory (NMR)
- Neuromuscular Morphology Unit.