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The RareConnect Polls: Highlighting the challenges faced by people living with a rare disease

June 2014

computerRareConnect, a EURORDIS initiative, brings thousands of patients, families, and groups, who might otherwise be isolated, together via a safe, moderated online network for rare disease communities to discuss, share and learn together.

Patients and families use the RareConnect platform to exchange experiences on their challenges and to work towards finding solutions. To better identify and understand the challenges faced by people living with a rare disease, RareConnect has created polls that are distributed to patient communities. The first poll to be completed is for Behçet syndrome. The results of this poll are available via a detailed infographic published on the RareConnect website. Recently, another poll was conducted for atypical hemolytic uremic syndrome (aHUS). The results are being compiled and will soon be available in an infographic. Another survey is in the works for TRAPS syndrome (also known as Familial Hibernian Fever) and will be disseminated soon in five languages.

The RareConnect polls are deeply appreciated by the community. Leonard Woodward (aHUSUK) observed of the aHUS poll: “Undertaking the survey itself has created more awareness and understanding, and survey results have provided fresh insights into the rare disease issues faced by aHUS patients and families.”

Of the Behçet syndrome poll, Richard West (Behçet’s Syndrome Society UK) noted: “The survey gave us more evidence about Behcets from across the world rather than just the UK. It helped us understand that wherever in the world you lived and had this disease there were immense challenges for the patient and their family.

RareConnect has over 10,000 registered members from over 500 patient organisations. With visitors to the site from over 180 countries, to date, some 5 million words have been translated across 5 languages! The RareConnect communities are supported by a network of over 200 trained moderators nominated from partnering patient organisations. With live translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian and Spanish languages. Other languages are scheduled to be added.

RareConnect has just inaugurated its 55th rare disease community, for Kallmann syndrome, a congenital form of hypogonadotropic hypogonadism characterised by failure to start or fully complete puberty. 

Louise Taylor, Communications and Development Writer, EURORDIS