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What is a rare disease?

A disease is called "rare" when it affects a very small number of people. Less than one person in 2000 according to the European threshold. 3 to 4 million people are affected by a rare disease in France and nearly 30 million in Europe.

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.

Learn more about rare diseases:

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.

Visit the Orphanet Website


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.

Visit the website Maladies Rares Info Services

Affiche qu'est-ce qu'une maladie rareFaced 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 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.

Visit the Maladies rares Info Website 

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