RareConnect bringing more people together online


RareConnect provides a safe online platform for rare disease patients and their families to connect with others and to share experiences or knowledge. By doing so, it helps to fight against the isolation that people often experience as a result of living with a rare disease.

RareConnect was founded on the idea of disease-specific online communities that enable a rare disease patient or member of their family to connect online with somebody affected by the same disease wherever they are in the world.

RareConnect partners with over 600 rare disease patient organisations to stimulate conversations across 82 disease-specific communities. Expert patients and family members moderate each of these communities alongside a dedicated staff of community managers from EURORDIS.

Discussions on RareConnect are translated across six languages (English, French, German, Italian, Spanish, and Portuguese), breaking down language barriers to ensure that people all over the world can connect.

Watch the story of two families living with the FOXP1 gene mutation that were brought together by RareConnect and went on to meet in person in Holland.

New Discussion Groups

Since the recent launch of the updated RareConnect.org, the Discussion Groups, the newest feature of RareConnect, are helping rare disease patients previously unable to find a place online to connect with others. Since their launch in October 2015, there are now over 100 Discussion Groups. See this infographic on how they work.

In order to ensure all rare disease patients can connect with others online, the Discussion Groups are a place for discussion on wider topics that affect many or all rare disease patients (such as setting up a patient organisation for a rare disease, gene therapy or genetic testing), in addition to the already established disease-specific communities.

A patient organisation is also required to lead the creation of a RareConnect disease-specific community in cooperation with the RareConnect team. In cases when there is no patient organisation to do this, but there is still a patient searching for information on their specific disease, the Discussion Groups provide the perfect solution as a starting point for the patient to find others with the same disease. See this example of a Discussion Group that connected several people living with Melkersson-Rosenthal syndrome.

Get involved in RareConnect

To take part in a discussion, search the existing Discussion Groups or start a new discussion by asking a question or sharing a blog. You can also check to see if there is already an existing community for your specific disease.

Patient organisations can also apply to be listed as a resource for a Discussion Group while an individual can also apply to become a moderator of a Discussion Group. All applications are reviewed by the RareConnect team.

If you have any questions you can contact the RareConnect team: team@rareconnect.org or follow @RareConnect or RareConnect on Facebook.

Eva Bearryman, Junior Communications Manager, EURORDIS

Page created: 23/03/2016
Page last updated: 22/03/2016
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases