Maladies rares info services
Maladies Rares Info Services was created in October 2001 with the support of the Association Française contre les Myopathies (AFM), thanks to Téléthon donations.
Its information and support service is now recognized as a benchmark service for people affected by rare diseases, and for professionals in the health and social sector. The team is made up of medical and scientific professionals specializing in rare diseases. Their work is exclusively dedicated to Maladies Rares Info Services.
The “rare disease patient social network” is a complementary and now indispensable service for 250,000 Internet users a year. The Rare Disease Forum, for example, offers over 200 online communities where anyone affected by a rare disease can share information and experience. Moderated by the Maladies Rares Info Services information officers and registered with the CNIL, it offers every guarantee of security and quality of service.
Maladies Rares Info Services also offers training sessions for medical and social professionals. Effets Indésirables Info Services assists users of drugs taken for a rare disease in declaring these effects. The aim of the Observatoire des maladies rares is to gain a better understanding of the situation of sufferers and their families through qualitative and quantitative surveys.
Maladies Rares Info Services is supported by AFM-Téléthon and the French Ministry of Health.
- Telephone: 0800 40 40 43 (free service and call from metropolitan France and overseas territories) or + 33 1 56 53 81 36 (from abroad)
- The forum
