First World Scleroderma Conference A Great Success

Over 1,455 doctors, researchers, and patient and pharma’ representatives participated in the 1^st Systemic Sclerosis World Congress in Florence, Italy from February11 to 13, 2010. Only 500 were expected to register, so the huge turnout, which included about 120 patients, was heartwarming.

In addition to hosting dozens of plenary and concurrent sessions on an unusually wide range of SSc topics, the Congress featured approximately 400 posters and abstracts highlighting recent research results from around the world. The opening address by the UK’s Professor Dame Carol Black summarized the history of scleroderma, and the significant progress that has been made, particularly in the last decade, to understand and manage the disease. She cited, for example, major improvements in clinical expertise, in clinical trial activity, in cross-disciplinary collaboration, in targeted molecular therapies, and in the number and effectiveness of patient support groups as truly positive developments.

Canadian patient representatives included Mare Pacy and her daughter Dee, Catherine Fortuné and her husband Tim, Normand Ricard and his wife Annette, Maureen Sauvé and her husband David, Joan Kelly, and Bob Buzza. Canadian Scleroderma Research Group representatives included doctors Murray Baron, Janet Pope, Brett Thombs, Mervyn Gornitsky, and Suzanne Taillefer.

Dr. Murray Baron and Dr. Janet Pope served on the 46-member International Advisory Board that, with the help of basic and clinical research steering committees, designed the overall program. The program was supported by EUSTAR, which is the Trials and Research Group within the European League Against Rheumatism, the 16-member Federation of European Scleroderma Associations (FESCA) that was formed three years ago, and the US Scleroderma Foundation.

A highlight for the Canadian contingent was the opportunity to present the results of our extensive survey of scleroderma patients across Canada. This report was ably presented to the entire FESCA Board of Directors by Maureen Suavé. Her presentation highlighted salient points from the 77-page final report. It resonated with Board members, many of whom have scleroderma, from the outset, for it is rare that patients, collectively, present their concerns and priorities as a means of influencing research agendas. It is likely that a complementary version of her report will be published in rheumatological journals in Europe and North America, in the spring.

It is not possible on one page to summarize the many presentations that were made at the Congress. The topics were simply too numerous and, in many cases, too complex to do so. It is obvious, however, that scleroderma is emerging from the shadows at an accelerating rate, and that promising research is proceeding apace across many fronts by highly competent people. And, yes, there will likely be a 2^nd Congress, next year!

This summary report presented courtesy Bob Buzza, SSC Research Liaison Officer and delegate to the Congress.

...and this report from Bob's sister, Joan Kelly, also a delegate to the Congress:

The banquet was unbelievable…tables of 10 with 4 courses and 2 types of wine plus dessert wine and sparkling water or plain.  Everything was perfect.  Our table was with an Algerian nurse, a research Dr. from Sweden, a GP with scleroderma patients from Hungary, and from NA, the Pres. of the USA Scleroderma Society, a US surgeon who specializes in stem cell transplant in this condition, along with a renowned researcher from Ontario.  There was a lot of table-hopping, laughter and frivolity in a perfect ambience. 

The next day we went on a tour to Chianti, where the castle is - with the wine-making dungeons in the castle…they have over 4000 hectares in different kinds of grapes, but the one special one for chianti is foremost….we got to taste a young one, a middle-aged one and a fully aged one, as well as a dessert wine from another type of their grapes….sweet of course, but delicious with their biscotti dipped into it. It has become Italy’s favorite dessert.  We stopped in a town with a children’s festival (like Hallowe’en) on the go and the costumes and colors and sights in such a background of laughter was uplifting…. Through the noise of the band, the flame-tossing, and the young ones on six foot stilts, everyone wore beaming smiles!