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.
RareConnect offers it’s users a unique experience due to the platforms disease specific online communities around topics of interest which may be disease specific or concern issues which touch on many disease areas.
RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. Communities are created in partnership with patient groups who bring resources such as moderators, relationships with specialists and validated information. Find a community above using the search box or visit our list of communities.
RareConnect helps people who live with rare diseases from around the world to connect by providing different translation services. We provide an integrated machine-translation service but also an additional human translation service to ensure quality communication between members of the network.
Connect with other people living with rare diseases in order to share experiences, find support, ask questions and gain access to a rich network of supportive patient organisations.
RareConnect is divided into disease specific online communities and discussion groups around topics of interest which may be disease specific or concern issues which touch on many disease areas.
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.
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 eurordis.org/international.
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.
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.
Beyond signing up and becoming a member of RareConnect, there are many other ways in which you or your organization can get involved in the platform