December 5th, 2023 RareConnect was retired on December 5th, 2023. Users can read posts and comments made before Dec 5th, 2023 across the existing communities. However, users cannot create new communities or posts, or use the private message function. For more information, please see the announcement post: Announcements

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Connecting rare disease patients globally

Sunna lives in Reykjavik, Iceland, and suffers from Alternating Hemiplegia of Childhood (AHC). Photo courtesy of EURORDIS Photo Contest.

About RareConnect

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.

About Us

December 5th, 2023 RareConnect was retired on December 5th, 2023. Users can read posts and comments made before Dec 5th, 2023 across the existing communities. However, users cannot create new communities or posts, or use the private message function. For more information, please see the announcement post: Announcements

Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally. RareConnect is a safe environment where privacy is respected and where trusted information is shared via real patient representatives.


Patient-led

RareConnect is a patient-led initiative. Patient organisations partner with RareConnect, itself an international patient organisation, to create communities and provide moderators from within their network.

Experienced moderators

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 our online communities charter and supported on a daily basis by a team of community managers.

Non-profit

The RareConnect team is made up of employees from the non-profit organizations: EURORDIS- Rare Diseases Europe and Care4Rare Canada. Funding for RareConnect comes from grants and corporate sponsorship. For more information about corporate sponsorship through EURORDIS, please visit eurordis.org/international.

Data protection compliant

RareConnect has declared its activity with the French Data Protection Agency's CNiL as compliant with the European Directive on Data Protection as implemented into French legislation.

Secure communication

All communication between you and RareConnect servers are encrypted using certified Secure Socket Layers (SSL). This means that even on public networks hackers cannot listen to or capture sensitive data.

Building a Community of Trust

RareConnect is operated or endorsed by the following partners who have partnered with us to promote the platform to their members. We recognise and thank them for their efforts.


Operating Partners

Partners endorsing & supporting RareConnect