Association Française contre les Myopathies

About the AFM

Visit the AFM site The French group "families of SMA" was founded in 1986. Run by a team of ten volunteers, it currently has a membership of 560 families, and welcomes 30 to 40 new families each year. The group provides a meeting point and exchange where families speak freely and share their experiences. It aims to gather, process and diffuse the latest information about SMA and its treatment. The group acts as an interface with researchers and their laboratories. It is also a collective of vigilance and a force of proposals.

The group is a part of the French Association against the Myopathies (AFM). The AFM charity was founded in 1958 by volunteers: parents and people concerned by neuromuscular diseases. Its objective is to cure neuromuscular diseases (including SMA) with two key missions: "to understand", in order to develop the biotherapies and ultimately to cure these diseases and "to help", in order to reduce the handicap and the exclusion caused by these diseases.

The AFM promotes genetic knowledge; it funds research and has attracted numerous laboratories in France and worldwide to develop tools for a cure. To finance such missions, the AFM has, since 1987, organised a yearly "Téléthon" to collect funds and gain public awareness. For SMA, the Téléthon's funds helped French researchers to complete the mapping (1990) and the identification (1995) of the SMN gene. Since 1995 the AFM's "After gene program" has funded more than 30 labs each year to research and develop therapeutic approaches based on knowledge of genetics and the function of the SMN protein. The latest therapeutic strategies currently in pre-clinical evaluation were reviewed in a meeting held in May 2003 in Evry, France, which led to the creation of a task force to prepare for future clinical trials.

Contact Details

Telephone: +33 1 69 47 28 28
Facsimile: +33 1 60 77 12 16
Postal Address: 1, rue de l'International
BP 59 91002
Evry
Cedex
Email Address:
Web Site: www.afm-france.org
 

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