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15 Jun 2012

Finding information

Illustration for article: Finding information
In a knowledge-sharing procedure to improve treatment, AFM-Téléthon has helped implement tools providing information on rare diseases.

Orphanet is a world reference portal for rare diseases, orphan medicinal products and associated services. AFM-Téléthon has been involved in its development since it went on-line in 1997. Information is available for everyone: inventory of rare diseases and orphan medicinal products; encyclopaedia for professionals, the general public and emergency medical staff; directory of services (specialist consultations, diagnostic laboratories, current research, registers, clinical trials, patient associations); newsletter, etc. Orphanet is available in five languages: French, English, Italian, German and Spanish.

Learn more about Orphanet

Maladies Rares Info Services

Maladies Rares Info Service is a customized, telephone information service on rare diseases. 0810 63 19 20 (local call from a landline) and by email from its website.  .
This service, available only in French, is provided by a professional team with medical and scientific expertise. Maladies Rares Info Services is supported by AFM-Téléthon.

Learn more about Maladies Rares Info Service