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RareConnect was created by EURORDIS (European Rare Disease Organisation) to provide a safe online space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

The website features hundreds of online communities, each dedicated to a specific rare condition (including undiagnosed diseases and syndromes without names). Each community on RareConnect is moderated by a person living with a relevant rare disease and linked to a trusted patient group. Furthermore all moderators are trained in the use of their online communities charter and supported on a daily basis by a team of community managers.

National Organisation
Age range
Suitable for ages from 0 to 100 years
Referral route
No Referral Needed
For people with
Medical Conditions
Eligibility criteria
Open to Everyone
Provider category
Specialist Services - For those who require longer-term support

Publication on the Local Offer does not endorse a provider, so please take reasonable steps to ensure that any service found on the Local Offer is suitable for your family member. For more information, please read our disclaimer.

Last updated 10 April 2024