Communicating is an essential component of the AFM’s strategy, and its importance is recognised in the Association’s statutes.
Good communication helps in bringing neuromuscular diseases out of oblivion by alerting the authorities and public opinion, and by raising scientific and medical questions. It also aims to increase awareness about neuromuscular diseases and gene-based therapies on the part of both professionals and the general public in order to encourage a favourable climate for carrying out the AFM’s wider objectives.
Raising media awareness The AFM is conscious of its role as an intermediary of information, not only to the general public but also to specific groups (opinion leaders, physicians, health professionals etc). For this reason it has developed and maintained ongoing relations with numerous medias by disseminating information about its different missions.
‘Conquering myopathies’ (Vaincre les myopathies) - journal of the AFM This is a magazine of information for persons affected with neuromuscular diseases and their families. It is also distributed to medical and paramedical professionals as well as social workers.
It takes a practical and pedagogical approach to the subjects covered by giving a bi-monthly update of news about the AFM’s current missions.
Consult the Contents of the latest issue and subscribe.
Informing the general public
By receiving the general public during visits to the Généthon laboratory the AFM pursues its policy of explaining its scientific projects and reporting back on its use of donations. Généthon, the Institute of Myology and other AFM-supported laboratories in the regions open their doors during the Science Week or other ‘open days.’
Génocentre This
conference centre was created by the AFM in collaboration with the Departmental Councils of the Essonne and the Ile-de-France regions. It aims to contribute to the influence of Genopole and the site at Evry.
Since 2001, Génocentre has been available to the scientific teams of Génopole for their meetings, seminars and conferences. It has become not only a centre for debate about forgotten diseases but also a platform for exchange between researchers, patients and experts.
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