EURORDIS’ RareConnect launches polls to highlight rare disease diagnosis issues. Behçet’s syndrome is first to be published.
RareConnect, an online rare disease networking and information platform provided by EURODIS and Nord, has created a number of surveys designed to better understand the challenges faced by people living with a rare disease. RareConnect houses online spaces for fifty-five rare diseases, and they have begun a systematic polling of these groups to try and gain some insight in to the lives of their members and the impact rare disease has had on their life.
The Behçet’s syndrome community was the first to be polled, and the results have just been published in infographic form. Behçet’s causes the swelling of blood vessels, most commonly in the mouth and genitals, that lead to ulcers, or in more severe cases, sight loss, and strokes. 194 people affected by Behçet’s syndrome participated in the poll, and the results reveal some concerning facts about the rate and consequences of misdiagnoses amongst Behçet’s patients . With 32% of patients waiting more than 10 years for a diagnosis, and nearly 60% of patients reporting having received inappropriate treatments.
“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.” Richard West, Behçet’s Syndrome Society UK
RareConnect plan to continue distributing these survey’s and are currently circulating questions regarding TRAPS syndrome (Familial Hibernian Fever) and plan to release the results of their atypical haemolytic uremic syndrome (aHUS) poll shortly.