A Report on the 2010 Systemic Sclerosis World Congress

by Robert J. Riggs, Scleroderma Foundation CEO

This way!

Martine Clozel, M.D., Co-Founder of Actelion Pharmaceuticals US, Inc. and Robert J. Riggs, Scleroderma Foundation CEO.

Elaine Furst, R.N., M.S.N., former chair of the Scleroderma Foundation Board of Directors (center), sat with Beata Garay (left) an officer of FESCA (Federation of European Scleroderma Associations) and Anne Kennedy, President of FESCA.

Dan Furst, M.D., a member of the Scleroderma Foundation's Medical Advisory Board, with Anne Kennedy, President of FESCA.

In February, I attended the 1st World Congress on Systemic Sclerosis in Florence, Italy. The three-day medical conference was attended by more than 1,400 physicians and other medical professionals involved in scleroderma clinical research. In all, representatives from 64 countries were in attendance to participate in lectures and scientific presentations focused on the state of systemic sclerosis research, as well as initiatives to benefit clinical care and increase awareness of the disease.

In addition to the scientific meetings that I attended, there was also a daylong patient education day that included workshops on major topics of concern for those who live with scleroderma. Nine speakers drawn from among those attending the scientific meeting addressed the patient education workshops, focusing on different areas of the disease and its treatment, with question-and-answer sessions following the morning and afternoon sessions.

The Scleroderma Foundation was a co-sponsor of the patient education programming, along with the Federation of European Scleroderma Societies, known as FESCA. In all, approximately 140 patients registered to attend the event.

In addition to the wealth of knowledge the Congress availed to me, one of the most rewarding aspects of attending was the opportunity to meet with patients and leaders of our sister organizations in Europe and around the world. Representatives from 19 patient groups in 14 European countries that make up FESCA were there, in addition to other European groups that are not FESCA members (Sweden and Finland); there were also patient group representatives from Canada and Australia in attendance, making this an important opportunity for us to discuss cooperative awareness initiatives, including the June 29 “Scleroderma Awareness Day” across Europe. In that regard, the Canadian, Australian, and U.S. groups discussed joint efforts in our respective countries to make it a truly “world” scleroderma awareness day.

Talks focusing on collaborative initiatives that were started in Italy continued with the incoming president of the Scleroderma Society of Canada, Maureen Sauve. Maureen paid a special visit to the Foundation’s national office for a day of discussions this week, and it’s exciting to explore opportunities that are aimed at providing the best possible support to people living with scleroderma and their family members, as well as outreach and interaction with the international medical community working on scleroderma-related research and treatment.