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Strategy
Created in 1958 by a group of patients and their families, and recognized as being of public utility in 1976, AFM (French Muscular Dystrophy Association) has a single objective : to defeat neuromuscular diseases which are devastating muscle-wasting diseases. It has set itself two missions : curing neuromuscular diseases and reducing the disabilities they cause.
To achieve these goals, AFM organises a Telethon on the first weekend in December, every year since 1987. This fund-raising operation, combining a 30-hour TV show and tens of thousands of local events across France, also aims to raise public awareness of neuromuscular diseases. The Telethon provides most of our donations and operates as a important vehicle for information, communication and education. Since the first Telethon, major scientific progress and revolutions have marked AFM’s fight, supported by the determination of patients, families, scientists, volunteers and the generosity of millions of French people. This fight has led AFM to investigate beyond the field of neuromuscular diseases for several reasons :Since neuromuscular diseases affect muscles and neurons, AFM is dedicated to the development of an emerging science – Myology (science and treatment of the muscle) so that it becomes a discipline like cardiology, immunology, etc.
Main acts and achievements :
- As a result, AFM created the Institut de Myologie (Myology Institute), a center for international expertise on muscle, diseases, accidents and aging of muscles, within the Pitié-Salpêtrière Hospital complex.
- It also makes annual Calls for Proposals for “Fundamental myology and the development of therapeutics.”
Since neuromuscular diseases have a genetic origin, AFM takes part 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 our understanding of genetic diseases and open up treatment avenues based on an understanding of the genes.
Main acts and achievements :
- Généthon
- First maps of the human genome
- Support for 14 DNA banks
- Annual Calls for Proposals for fundamental myology and the development of therapeutics
- SIG Institute for Rare Diseases
- I-Stem project
- Atlantic Bio GMP Since neuromuscular diseases are rare diseases which are often neglected by the public health system, AFM has developed a global strategy that helps raise awareness of patients who are excluded from the social and economical life of society.
Main acts and achievements :
- Rare Diseases Platform
- Contribution to the development of the National Plan for Rare Diseases
- Scientific Interest Group – Institute for rare Diseases / National Research Agency call for tender
- “Collection and genes of rare diseases” mission
- Imagine Foundation Since neuromuscular diseases are chronic diseases which cause serious disabilities, the AFM has developed initiatives for the recognition of the right of each citizen to have access to ways of compensating for their disability (whether physical, intellectual or sensorial in origin) and to allow each to be an actor in their own life project.
Main acts and achievements :
- Creation of the profession Integration Assistant
- Involvement in the implementation of the law of February 2005 and participation in the setting up of MDPHs
- Living at home : Gâte-Argent
- Programme of technological innovation in technical aids AFM pursues a strategy encompassing all these areas : finding new solutions, implementing them (alone or with partners), and after verifying their effectiveness, encouraging the government and institutional partners to join in the effort. |
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