Association Française contre les Myopathies - AFM
Created in 1958 and managed by a group of patients and their families, AFM has become a strong organisation combining the militant energy of its founding members, the professionalization of its volunteer managers and the commitment of its employees.
AFM is involved in the development of scientific tools for the study of genetic and rare diseases in general, and provides scientists with new means and knowledge to accelerate understanding of genetic diseases and open treatment avenues based on an understanding of the genes. AFM is dedicated to the development of an emerging science – myology (science and treatment of the muscle) and helping patients (multidisciplinary consultations; regional services; development of innovative technical aids; the annual conference of families and members). AFM played a leading role in the development of the French National Plan for Rare Diseases and the Institute for Rare Diseases, which is funding French and European research projects.
AFM is a founder member of the ENMC, EURORDIS and the EAMDA (European Alliance of Neuromuscular Disorders Associations).
AFM has created the Institut de Myologie (Myology Institute), a reference centre for international expertise on diseases, accidents and aging of muscles, intended for research, diagnosis, care and teaching programs, within the Pitié-Salpêtrière Hospital complex (Paris). The Myology Institute houses research teams, genetic diagnostic services, a neuromuscular clinical unit dedicated to both medical care and clinical trials (including gene therapy and cell therapy), biological repositories (DNA, tissues), neuromuscular disease clinical unit, Neuromuscular physiology assessment team, neuromuscular disease laboratory; MRI laboratory; physiopathology and striated muscle therapy INSERM unit U582; stem cell and muscle biology INSERM unit
AFM has also created Généthon, a research center dedicated to the understanding and treatment of neuromuscular diseases.
1 Rue de l'Internationale
Christian Cottet is Chief Executive Officer of AFM. He is the father of a 25-year-old girl with SMA and has been involved in AFM activities for 22 years, first as a volunteer and now as CEO.
Serge Braun PharmD, PhD has 20 years of experience devoted to neuromuscular diseases in both academic and private laboratories, together with specific expertise in R&D in gene, cell and pharmacology therapies.
Marie-Christine is the mother of a girl affected by SMA. She is a member of AFM Board of Directors, AFM international committee and TREAT-NMD Project Ethics Council. She is also Vice President of SMA Europe (association of European SMA patients)
Beatrice de Montleau is the mother of three children, the youngest of whom is affected by Duchenne Muscular Dystrophy. Beatrice began her volunteer involvement with the AFM (French Muscular Dystrophy Association) by serving on the financial committee, bringing to that service a professional background in internal audit and sustainable development.
Dr. Francoise Rouault joined the scientific direction of the AFM in October 2009 as International Scientific Affairs Manager.
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Laurence Tiennot Herment was elected president of AFM in 2003. Prior to taking on the presidential role she had supported AFM’s cause for many years, first as a member of an AFM delegation, then as a member of the Board of Directors (secretary then vice-chairwoman), having been inspired to join the organisation after her son was diagnosed with Duchenne muscular dystrophy.