Rare disease patient groups using Orphanet effectively

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.

A list of diseases can be found here.

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

Register your patient group activity on Orphanet

  • 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

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Download the app

Orphanet for AndroidiPhone

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).

orphanet_app

Subscribe to Orphanews

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.

orphanews

 

Contact the National Orphanet Team in your country

 

Orphanet ArmeniaOrphanet GreeceOrphanet Poland
Orphanet AustraliaOrphanet HungriaOrphanet Portugal
Orphanet AustriaOrphanet IrelandOrphanet Quebec/Canada
Orphanet BelgiumOrphanet IsraelOrphanet Romania
Orphanet BulgariaOrphanet ItaliaOrphanet Serbia
Orphanet CroatiaOrphanet LatviaOrphanet Slovakia
Orphanet CyprusOrphanet LebanonOrphanet Slovenia
Orphanet Czech RepublicOrphanet LithuaniaOrphanet Spain
Orphanet DenmarkOrphanet LuxembourgOrphanet Sweden
Orphanet EstoniaOrphanet MoroccoOrphanet Switzerland
Orphanet FinlandOrphanet NetherlandsOrphanet Turkey
Orphanet FranceOrphanet NorwayOrphanet United Kingdom
Orphanet Germany

Guide people to the rare disease help line in their area

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.

Submit an article to the Orphanet Journal of Rare Diseases

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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