Orphanet: The rare disease information portal

WEBSITE

Orphanet is a free, international website dedicated to rare diseases and orphan drugs. It provides reliable, easy-to-understand information and tools to help patients, families, and caregivers navigate life with a rare condition.

Key features for patients:

  • Rare disease encyclopedia: Summaries of 6,000+ rare diseases, including symptoms, causes, management, and prognosis, in multiple languages.

  • Patient organizations: Directories of support groups and advocacy networks by disease and country.

  • Expert care directories: Find specialized clinics, diagnostic labs, and medical experts worldwide.

  • Treatment & emergency guides: Information on orphan drugs, clinical trials, and acute care guidelines.

  • Research links: Access to registries, biobanks, and ongoing studies.

Note: Resource summaries and translations into relevant languages were produced with the assistance of ChatGPT.