Irish Raynaud's & Scleroderma Society

World Scleroderma Conference

First World SSc Congress-after the event

In Florence on February 12, 2010, the Federation of European Scleroderma Associations (FESCA) held the first World Scleroderma Patient Congress. It was part of a dual event organised with EUSTAR (EULAR Scleroderma Trials and Research)-a 3-day scientific congress and simultaneous 1-day patient congress, with sightseeing and dinners arranged by FESCA for patients to round out the networking experience.

Attendance

Over 1300 attended the congresses, and 143 of them were patients, which was a startling number given the bitter cold, a symptom-trigger for scleroderma sufferers. Patients came not only from all 14 FESCA countries and its 19 separate organisations, but also from Canada, the USA, and Australia. Nine speakers addressed the patients, focussing on different areas of the disease, and active question-and-answer sessions followed morning and afternoon sessions.

Positive Event

The congress was a very positive event in more ways than one for patient organisations, some of which are newly formed, like those in Poland, Denmark, and Portugal, while others are well-established, like France and Ireland. For some, like Germany, the work of support and advocacy has been entirely national until recently.

Opening Ceremonies

The Opening Ceremonies honoured patient support groups as a valuable part of the team fighting this severely debilitating disease. The congress steering committee invited both the president of EULAR and the president of FESCA (CEO of the Irish Raynaud’s & Scleroderma Society)  to speak in the awe-inspiring Grand Council Hall of the Palazzo Vecchio, built in 1494, on a stage built by Cosimo I to welcome his ambassadors.  This was a congress where the input of both patient and doctor were respected.