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About Us

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.


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.


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

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.