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.


* The information on this website is for general information only and does not replace medical advice from your doctor or healthcare professional. Always discuss your personal situation with your treating healthcare team. Healthcare systems and medical practice may differ between countries, so some information may not apply to your country. Copyright of third-party documents is respected. We are not responsible for the content of external websites linked from this site.