Rare disease databases
RareConnect
Patient communities for rare diseases
"Moderated, multilingual patient communities for hundreds of rare diseases."
About the resource
RareConnect is run jointly by EURORDIS (Europe) and NORD (US) and hosts moderated patient communities for hundreds of individual rare diseases, available in multiple languages. Each community provides discussion spaces, plain-language disease information, links to expert centres and a moderated channel between patients and clinicians.
For researchers, RareConnect is less a structured database and more a way to reach hard-to-find patient cohorts and surface lived-experience signal that registries don't capture. It's frequently used for survey recruitment and natural-history outreach in rare-disease research.
What you'd use it for
- 01Recruit participants for a rare-disease survey or natural-history study
- 02Surface lived-experience signal complementing registry data
- 03Connect with international patient-organisation contacts
- 04Pilot patient-facing materials with engaged community moderators
How you access it
Web UI (multilingual)Discussion forumsResource libraries