3rd Systemic Sclerosis World Congress
The Third Systemic Sclerosis World Congress was held in Rome from 6-8 February 2014, and an audience with His Holiness Pope Francis preceded it for people with scleroderma. This was a moving and momentous beginning to an extremely informative event, where scleroderma specialists and people with scleroderma gave talks and workshops during the two days of the patient congress.
Rome, Italy – February 6th – 8th, 2014
Message from the president, Ann Tyrrell Kennedy
The Third World Systemic Sclerosis Congress was held in Rome from 6-8 February 2014, and an audience with the Pope preceded it for people with scleroderma. This was a moving and momentous beginning to an extremely informative event.
The Federation of European Scleroderma Associations aisbl (FESCA), working with the World Scleroderma Foundation (WSF), developed twin congresses, one for patients and one for medical professionals, so that each might benefit from the knowledge and experience of the other. The more than one thousand rheumatologists and consultants attending the medical congress spoke of how much they learned from the presence of the patients, both in hands-on workshops, and in sessions dedicated to the needs of patients as expressed by patients. As FESCA aisbl president Ann Tyrrell Kennedy said in her opening speech, the priorities of patients and researchers are not necessarily the same, and communication between the two should be an essential part of any research project from the very start.
She also addressed the question of healing, as opposed to curing, saying that although the capability to cure scleroderma, to rid the body of all trace of the disease, is still some years away, doctors can make it their goal to heal their patients. “To cure is to remove disease,” she said. “To heal is to make whole, and wholeness can belong as much to the infirm as to the healthy.”
FESCA aisbl is an umbrella group composed of 23 patient support and advocacy organisations in 18 countries, and open to all national groups in Europe that support those with scleroderma. Representatives from practically all EU countries attended the patient congress, along with patients from countries around the world such as the USA, Canada, Australia, and Indonesia.
Scleroderma specialists and people with scleroderma gave talks and workshops during the two days of the patient congress in sessions on topics such as gastrointestinal tract involvement, nutrition, breathing issues, digital ulcers, self-esteem, sexuality in men and women, pregnancy, stem-cell-transplantation, self-management, new treatments, juvenile scleroderma, and corrective make-up techniques. These sessions correlated with the scientific sessions in the medical congress, and interested doctors were free to attend all. The patient programme was translated simultaneously into Italian, Spanish, and French.
Many of the presentations have kindly been made available to us by the speakers, so that those who were unable to attend the FESCA/WSF congress may read them.
Download the patient programme:
Presentations
Friday, February 7th:
Concurrent sessions, Juveline Scleroderma, For Men Only and Breathing exercises were without presentations and translation.
09.00 FESCA aisbl Welcome, Ann Kennedy (IRL)
09.10 Why did I get scleroderma and will I get cured, Jaap van Laar (UK)
09.30 Why is breathing so difficult? Oliver Distler (D)
09.50 The patients perspective on lung problems, Kim Fligelstone (UK)
11.00 What can I do to help digestion processes? Janet Pope (CAN)
11.20 Tips for people with GI problems, Susie Hoare (UK)
11.45 Sexuality and pregnancy in SSc, Angela Tincani (I)
12.05 How I had a baby, Johanna Berglind (S) & Jessica Thonen-Velthuizen (NL)
12.30-14.00 LUNCH
14.00 Transplants of different kinds – are they for me? Alan Tyndall (CH)
14.20 A patient perspective on transplants, Gabrielle Verzi (I)
14.30 My story, my transplants, Jessica Thonen-Velthuizen (NL)
15.00 Hand and face exercises, Paul Briffa (UK)
15.15 Dentistry in SSc, Roberto Rozza (I)
15.30 Useful equipment and tips, Annelise Roennow (DK)
Saturday, February 8th
Concurrent sessions, New treatments in Scleroderma and Workshop in methods of facial camouflage, were without presentations and translation.
09.00 New EULAR-ACR classification of SSc, Frank van den Hoogen (NL)
09.15 New Treatments in Scleroderma, Chris Denton (UK)
10.00 What can be done for my digital ulcers, Marco Matucci-Cerinic (I)
10.20 Taking care of your ulcers, Barbara Gemmell (AUS)
10.45-11.15 COFFEE BREAK
11.00 What are your concerns? Questions to the panel, Chris Denton (UK) and Janet Pope (CAN)
12.00 Carers and family members, Robyn Sims (AUS)
12.10 Coping with the emotional aspects of SSc, Brett Thombs (CAN)
12.25 Fatigue and how to deal with it, Janet Poole (USA)
13.00 Closure of Medical and Patient Congresses
Scleroderma research
FESCA, Federation of European Scleroderma Associations aisbl, encourages and undertake surveys, research projects and clinical trials related to the systemic sclerosis disease, and the publication of the results of any such research.
FESCA is always looking for better therapies. This is why we are partners with many different pharma companies. Pay our Scleroderma projects section a visit, and learn more about scleroderma research projects we're involved in.