2nd Systemic Sclerosis World Congress

Madrid, Spain – February 2nd – 4th, 2012

Summary of the event
The Second World Systemic Sclerosis Congress was held in Madrid this year from February 2-4.

This congress is biennial, and was first held two years ago in Florence. Since that time, it has grown significantly.

Held under the auspices of the World Scleroderma Foundation (WSF), a Swiss-based foundation for the development of funding for research into scleroderma, the World Scleroderma Congress (WSC) is conceived as a dual affair. The scientific programme addresses rheumatologists and all those interested in treating or researching scleroderma, and the twinned patient programme answers the needs of patients from around the world. There are also satellite symposia run by pharmaceutical companies, and workshops offering specific training such as skin-scoring and capillaroscopy to young rheumatologists. Poster and abstracts sessions offer the opportunity to present research where there is not sufficient time for full presentations. The scientific programme is developed and run by EUSTAR; the patient programme is developed and run by FESCA.

The patient congress in 2012 had 261 participants and the medical congress had 1,141 participants, from 59 countries. The medical abstracts numbered 370, and were submitted by 43 different countries. It was a very full two and a half-day congress with combined events, FESCA and EUSTAR joining to launch the opening and closing ceremonies, which included flamenco entertainment and dinners.

The patient congress, which offered simultaneous translation into Spanish and French via headphones, provided a wide variety of talks that were found almost without exception to be informative and interesting. The programme was created as a series of themed modules, each of which had two or three speakers drawn from among both consultants and patients. Each module also had both a medical and a patient chairperson to deal with its question and answer session. This concept proved very successful, and despite long days the room was always full.

FESCA also held a roundtable networking meeting for the heads of patient organisations on the first day of the congress, attended by 34 CEOs and Presidents, including a large number from South American countries, along with Canada, USA, Australia, and European countries. Most countries, of course, only sent a few participants to the congress due to travel costs, but these included patients from Mauritania and the Asia.

The Third World Scleroderma Congress will be held in Rome, at the beginning of February 2014

Ann Tyrrell Kennedy, President
Federation of European Scleroderma Associations

Congress programme

Friday, February 3, 2012
09.00-09.30 What is Scleroderma?
09.00 Fesca Welcome & Chair
(Ann Kennedy – IRL)
09.05 What is Scleroderma, and Why me?
(Oliver Distler – CH)
09.20 Describing & Measuring systemic sclerosis for the WHO
(Leslie Ann Saketkoo – USA)
09.30-10.40 The Gastrointestinal Tract
Chair: Nemanja Damjanov – RS,
Fesca Co-chair: Ann Kennedy – IRL

09.30 Gastrointestinal involvement
(Dinesh Khanna – USA)

09.50 – Nutrition therapy in systemic sclerosis
(Gabriela Riemekasten – D)

10.10 Questions to the Panel

10.40-11.00 How to Use Survey Results
(Maureen Sauvé/Scleroderma Society of Canada – CAN)

11.00-11.30 Coffee Break

11.30-13.00 Vascular Problems
Chair: Dan Furst – USA;
Fesca Co-Chair: Annelise Roennow – DK
11.30 Secondary Raynaud’s
(Ulf Müller-Ladner – D)
11.50 Digital Ulcers
(Marco Matucci-Cerinic – I)
12.10 Wound Care
(Barbara Gemmell – AUS)

13.00-14.00 Lunch

14.00-15.15 Cardiopulmunary Issues
Chair: Rich Silver;
Fesca Co-Chair: Gabriella Verzi – I
14.00 Issues with the Lungs
(Lolc Guillevin – F)
14.25 Problems with the heart
(Yannick Allanore – F)
14.50 Questions to the panel

15.15-16.30 Living with scleroderma
Chair: Ann Kennedy – IRL;
Co-Chair: Alan Tyndall – CH
15.15 Tips on Self-Management
(Kim Fligelstone – UK)
15.45 Coming to Terms with my Life with systemic sclerosis
(Annelise Roennow – DK)
16.05 Interactive session / Open discussion

Saturday, February 4, 2012
09.00-09.45 The importance of clinical trials
Chair: Ann Kennedy – IRL;
Co-Chair: Dominique Farge – F
09.00 Stem Cell Therapy
(Alan Tyndall – CH)
09.25 The patient perspective on Stem Cell transplant
(Gabriella Varzi – I)
09.40 Questions to the panel

09.45-11.00 Sexuality and pregnancy
Chair: Ulf Müller-Ladner – D,
Fesca co-chair: Grazia Tassini – I
09.45 Sexuality in systemic sclerosis for men & women
(Ulrich Walker – CH)
10.15 Pregnancy
(Antonio Brucato – I)
10.35 The patient Perspective
(Johanna Berglind de Backer – S)
10.45 Questions to the panel

11.00-11.30 Coffee Break

11.30-12.00 Juvenile Scleroderma
(Ivan Foeldvari – D)
12.00-13.00 Musculo-Skeletal Issues
Chair: Laszlo Czirjak – H;
Fesca co-chair: Manuela Perez Perez – E

12.00 DocSpot – What scleroderma patients want to know
(Chris Denton – UK)

12.30 Questions to the panel

13.00-14.00 Lunch

14.00-15.30 Coping with chronic disease
Co-chairs: Ann Kennedy – IRL &
Kim Fligelstone – UK
14.00 How to deal with psychological issues
(Linda Kwakkenbos – NL)
14.20 Achieving Self-esteem
(Catarina Leite – P)
14.35 Remaining Cheerful
(Nadine Paciotti – CH)
14.45 Interactive panel on self-esteem/quality of life

15.30-16.30 Physiotherapy and exercise
15.30 Physiotherapist
(Will Gregory – UK)
15.50 Occupational therapist
(Janet Poole – USA)
16.10 Physiotherapist and FESCA member
(Jadranka Brozd – HR)