Orphanet is the most important database in the European Union for rare diseases and orphan drugs for the general public. It contains information about 6 000 diseases and is freely accessible.
Orphanet aims to offer health-care professionals, scientists, health authorities, patients and their relatives, the media and the community at large reliable, up-to-date, relevant information on rare diseases and orphan drugs.
The portal includes a rare diseases encyclopedia, written by experts and peer-reviewed, and a directory of services. The directory includes information about specialized outpatient clinics, diagnostic laboratories and support groups in Europe. It is accessible in English, French, German, Italian, Spanish, Portuguese, and Dutch.
Here are some ways you can use Orphanet as a rare disease patient group
- Your link and contact information appear in the Patient Organizations section of a disease article
- Listing in the support groups search
- Register new activities or check and update activites related to rare diseases
Download the app
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).
OrphaNews 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.