The Voice of Rare Disease
Patients in Europe
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 infographicon 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 aDiscussion 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: email@example.com or follow@RareConnect or RareConnect on Facebook.
Eva Bearryman, Junior Communications Manager, EURORDIS