Our history

A venture born of a citizens’ movement

The result of a unique partnership between patients, researchers and doctors, this centre for research, expertise, care and teaching is devoted exclusively to muscle and its diseases. It is helping to bring about the emergence of a medical speciality neglected for almost a century: myology.

Long in the making, the Institute of Myology grew out of the determination of patients brought together within AFM to create a “place” where they could at last receive a diagnosis and care, and where muscle diseases, poorly understood and poorly taught, could be studied and… cured. In 1987, the first Téléthon gave AFM the means to carry out this ambitious project.

Key dates

The first Téléthon gave AFM-Téléthon the means to launch an ambitious project long in the making: to create a research and care institute dedicated to muscle and its diseases.

Launch of the architectural competition for the construction of the Bâtiment Babinski, intended to house the Institute of Myology among others.

Setting up of a multidisciplinary consultation dedicated to neuromuscular diseases in the Pavillon Risler pending completion of the works

Inauguration of the Institute of Myology by François d’Aubert, Secretary of State for Research, and Claudie Haigneré, the French astronaut and patron of the Institute.

Launch of the world’s first gene therapy trial for Duchenne muscular dystrophy, conducted at the Institute of Myology by Transgène and co-funded by AFM-Téléthon.

The Institute was accredited as a reference centre for neuromuscular diseases as part of the first French national rare disease plan (Plan National Maladies Rares, PNMR 1).

The Institute of Myology Association, governed by the loi du 1er juillet 1901 (the French law on associations), came into being. Its founding members are AFM-Téléthon and Généthon. Its mission is to facilitate the coordination of activities on the site, in partnership with five public institutions: AP-HP, CEA, Inserm, Sorbonne University (formerly Université Pierre et Marie Curie) and CNRS.
Opening of UMR 787, a research unit dedicated to myology.

Creation of a department dedicated to clinical trials.

First encouraging results of gene therapy for gamma-sarcoglycanopathy, a trial conducted in collaboration with Généthon.

Creation of the Center of Research in Myology.

Opening of I-Motion, a clinical centre dedicated to paediatric trials of innovative therapies.

Accreditation of the neuromuscular disease reference centre as part of the European Reference Networks (ERN).

The Institute of Myology coordinates the European Reference Network EURO-NMD.

Opening of the Service of Neuro-Myology and of a second platform dedicated to clinical trials in adults, I-Motion Adults.

Creation of the Neuromuscular Investigation Center (NIC), bringing together four areas of scientific expertise.

Signing of the preliminary sale agreement for a plot of land adjoining the Pitié-Salpêtrière Hospital and selection of the architect for the future building of the Foundation of Myology (“Fondation de Myologie”).

Organisation of the first Assises du Muscle (Muscle Conference) and launch of the first edition of the Semaine du Muscle (Muscle Week) by the Institute of Myology in collaboration with AFM-Téléthon. The aim: to raise awareness among as many people as possible of the major role our muscles play in our day-to-day balance and overall health, and to promote muscle as a public health issue.

The second edition of the Semaine du Muscle is awarded the “Grande Cause Nationale 2024” label, France’s national cause of the year.

Laying of the foundation stone of the Foundation of Myology on 17 June 2025.

A physician-scientist, Michel Fardeau first served as a senior registrar (“chef de clinique”) in the Paris public hospitals before working, in the late 1960s, with the National Institutes of Health (NIH) in Bethesda, United States, alongside his American counterpart King W Engel, with whom he laid the foundations of neuromuscular histological investigation by electron microscopy.

He then set up his own electron microscopy laboratory at the Pitié-Salpêtrière Hospital, which went on to become a CNRS research team in 1971 and then an Inserm research unit from 1976 to 1998.

This would become the cornerstone of the Institute of Myology, created by AFM in 1996, which he headed from its inception, as Medical and Scientific Director, until 2006.