Orphan diseases support groups

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Rare disease patient groups using Orphanet effectively

The Orphanet mobile application, freely available for iPhone, iPad and Android, gives access to the main Orphanet services without any Internet connection and in 6 languages (English, French, German, Italian, Portuguese and Spanish).

ahusOrphaNews is the freely available, twice-monthly electronic newsletter of the European Union Committee of Experts on Rare Diseases (formerly the EC Rare Diseases Task Force). Find out the latest in rare diseases. View the archives of past issues.

Contact the National Orphanet Team in your country

Have a question that would be best addressed by a rare disease professional? Look at the list of rare disease help lines and guide people to the right contact information for their country.

Orphanet Journal of Rare Diseases is an open access, online journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs.

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