Sharing experience of the disease
AFM-Téléthon is organised into local delegations run by volunteers who are themselves patients or close to a patient. Their role? Firstly, to support the families and help them to emerge from the isolation in which the severity of neuromuscular disease can confine them.
AFM-Téléthon representatives in the départements, the delegations also take part in operations concerning the association's goals and they defend members' interests by sitting on local boards such as the Commission des Droits et de l'Autonomie des Personnes Handicapées (CDAPH - French commission for the rights and independence of people with disabilities), which makes decisions on requests for compensation for the disabled.
Experts in neuromuscular diseases
There are about 200 neuromuscular diseases. AFM-Téléthon has therefore set up interest groups bringing together volunteers who are affected by the same disease. With their experience and expertise in the particular disease which affects them, they help listen to families and provide them with information. But they are also valuable contacts for professionals who they help to make progress in research, treatment and support for patients.