Orphanet is the European reference portal for rare conditions and orphan drugs. Established in France in 1997, Orphanet has grown to include 41 countries across Europe and the Globe. Orphanet provides reliable, high-quality information with the aim of improving diagnosis, care and treatment of people with rare conditions

The Orphanet portal includes information on:

  • Rare Conditions (and genes involved)
  • Expert Centres
  • Patient Organisations
  • Professionals and Institutions
  • Clinical Trials and other research

To access Orphanet click on the following link: https://www.orpha.net/consor/cgi-bin/index.php

Other useful links

You can find more information on Orphanet beginner’s guide.

European Commission – European Reference Networks https://health.ec.europa.eu/european-reference-networks/overview_en