Currently, about 7000 rare diseases have been identified but new rare diseases are discovered and identified each week. 80% of rare diseases have a genetic origin.
The rare diseases covered by SENSGENE are the rare sensory diseases of vision and hearing.
Orphanet has been since 1997 the reference information portal for rare diseases, orphan drugs and care in France, Europe and several other countries participating in the international consortium, for all audiences. Available in several languages, more than one million pages of the site are consulted from around the world each month.
Created in 2001, this information and support association is now recognized as a reference service. In particular, it provides answers per telephone and e-mail, a service for the connection of isolated patients and a training service offered to professionals.
Faced with rare diseases and their many problems, the Rare Diseases branches and Maladies Rares Info Services launched their first information and communication campaign through posters and a web page www.maladiesraresinfo.org. Benefiting from a national diffusion, they will allow any sick person, any family, any professional, to have access to the information and the necessary resources.