1st Systemic Sclerosis World Congress

Florence, Italy – February 12, 2010

Summary of 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), in the form of 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. 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, and from other nations not yet in FESCA, like Sweden. Nine speakers addressed the patients, focussing on different areas of the disease and their treatment, and active question-and-answer sessions followed morning and afternoon sessions.

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. It was a great opportunity to see how issues are handled in other areas of the world and to forge links to improve the situation.

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 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. Overall, the feeling at the congress was one of a growing team-spirit. This was a congress where both patient and doctor input was respected.

Ann Tyrrell Kennedy
President, FESCA

The First World Scleroderma Congress for Patients
On February 12, 2010, the first World Scleroderma Congress was held in Florence. A dual event, it offered separate conferences for doctors and patients, with talks in English on all aspects of the disease.

By Beverley Power , a nurse who also has SSc, and is a member of the Irish Raynaud’s & Scleroderma Society . Beverley attended the congress from Dublin, Ireland.

The first World-Wide Congress for System Sclerosis brought together medical and patient groups from the four corners of the world. Sharing information among the patient groups and learning about on-going research into this complex condition allows us to use our hard-won funding to get the most effective treatment for patients.

Florence is as beautiful a city as ever, and the purpose-built conference centre is an impressive structure. Wide ramps connect its three levels. The main auditorium is excellent, and the patients also had a number of meeting rooms assigned to them, allowing us to move between rooms. The organisation and planning by FESCA & EUSTAR was very good, delivering a smoothly run event, with 9 lectures for patients.

A sponsored meal for the patients on Friday night gave us a chance to exchange experiences in a lovely cosy Tuscan Restaurant (when we finally did locate it – house numbering was very confusing and comical, but it was worth it).

After exposure at the congress to what is going on elsewhere, my overall impression from the patient’s point of view is that the Irish Society, like those in other small countries, is fighting a difficult battle because we have a relatively small patient base. We are struggling to raise sufficient funding to provide in Ireland a workable dedicated nurse practitioner unit which can’t be diluted or merged into other areas. It was particularly interesting to meet the Australian representative and hear just how effective the specialist nurse approach is. Getting a specialist nurse on the phone immediately to discuss changes noticed by the patient and to organise consultant clinic visits where appropriate helps so much. Our Irish Society has been working on this project for some time using the example of the Royal Free in London as our guide.

It was nice to see as one of the speakers the living/breathing model of Dr. Chris Denton, whose answers to patient questions I very much enjoy reading. I had hoped that the doctors would agree on a guide to “best practice”. Whilst I appreciate that each case can vary, and decisions are based on clinical knowledge, patients do find it difficult to understand why treatment approaches vary so much and this can undermine their confidence. Personally I wish that government funding could be made available to attempt to find a cause for SSc.

I believe the next Congress is to be in Madrid in 2012—and I’m looking forward to that. Meanwhile the input of each patient to our Patient Support Society is so important and appreciated so much. It is due to loyalty and openness that we will be able to get nearer to accurate patient numbers. Public awareness is so important in terms of access to services.

We ended our time in Florence by celebrating St Valentine’s Day, which they do in style! Lovely atmosphere, and the children in fancy dress spreading confetti over each other.