1ST SYSTEMIC SCLEROSIS WORLD CONGRESS

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.

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Invitation

In February 2010, a World Scleroderma Congress will be held in Florence. This will be a dual event, consisting of a 3-day congress for doctors, and a one-day event for patients at which rheumatologists will address issues of interest to people who have scleroderma. All lectures and events will be in English, but FESCA is investigating the possibility of translation.

The congress will be a worthwhile trip for couples, families, or groups of friends. Not only will the speakers be world-class, but Florence is a wonderful destination that is fun to visit –and magical for Valentine’s Day weekend.

The patient congress will be held on Friday February 12th from 10 am until 2 pm. Before and after, visitors will be able to sightsee, enjoy the city’s views and restaurants, and go to the museums and churches. A tour of the city will be arranged for those who want.

Those who register for the congress will have to pay only €25.00 as a subsidized attendance fee, and hotel accommodation can be booked at preferential rates. Flights can be booked into Florence airport, and cheap flights are available on RyanAir into Pisa, from where there is a direct bus to Florence. Accommodation is booked through the local travel agency AIM.

The occasion is being planned as a networking event for Scleroderma patients as much as an information-gathering event. We do not anticipate large numbers, and the congress will not be stressful or over-long. Please contact your national organisation to learn more.

Dates of medical congress: February 11, 2010 - February 13, 2010

Date of patient congress: Friday February 12, 2010

Location: Florence, Italy

OPENING CEREMONIES

Thursday 11 February

12.00 – 18.00		Registration
13.30 – 18.00		Congress for the doctors. This begins with a lecture by Professor Dame Carol Black on « Scleroderma : History and Prospects ». All registered patients are welcome to attend.
18.00 – 19.00		Official Congress Inauguration at the Palazzo Vecchio. Opening Ceremonies will feature talks by President of EULAR Dr. P. Emery, President of FESCA Ann Tyrrell Kennedy, and FESCA patient representative Annelise Roennow on « What it Means to have Scleroderma ».
19.00 – 20.00		Welcome Cocktails in Palazzo Vecchio. All registered patients are welcome.
20.00		Adjourn

PATIENT PROGRAM

Friday 12 February

09.00		FESCA team arrives at desks, to guide patients to talks. Once registered, patients may move between rooms A&B at will. Patients may attend medical sessions.
09.00 - 10.00		REGISTRATION OF PATIENTS. BADGES GIVEN
10.00		CONFERENCE BEGINS WITH WELCOME IN ROOMA FOR BOTH GROUPS

Room A—CHAIR : Dr. Daniel Furst

10.00 – 10.10	Dr. Daniel Furst	Welcome
10.10 – 10.15	Ann Tyrrell Kennedy	Introduction & Housekeeping
Start of lectures:
10.20 – 11.00	Dr. FredWigley	Raynaud’s Disease + Q&A
11.00 – 11.45	Dr. J. Van Laar	Treatments for SSc + Q&A
11.45 – 12.15	COFFEE AND STRETCHING BREAK
12.15 – 13.00	Dr. J. Seibold	Cardiovascular issues in SSc + Q&
13.00– 14.00	LUNCH BREAK

Room B—CHAIR : Ann Tyrrell Kennedy

10.00 – 10.15	Welcome in Room A
10.20 – 11.00	Dr. Chris Denton Renal	Complication in SSc + Q&A
11.00 – 11.45	Dr. Yannick Allanore	Musculoskeletal Issues + Q&A
11.45 – 12.15	COFFEE AND STRETCHING BREAK
12.15 – 13.00	Dr. R. Silver	The Lungs in SSc + Q&A
13.00– 14.00	LUNCH BREAK

Room A—JOINT SESSIONS

14.00 – 14.45	Dr. L. Czirjak	Gastro-intestinal tract + Q&A
14.45 – 15.05	Beata Garay-Toth, FESCA VP	Living with Scleroderma
15.05 – 15.25	Ms. Elaine Furst, R.N., M.A.	Coping with Chronic Disease
15.25 – 16.00	PANEL DISCUSSION TO ANSWER PATIENT QUESTIONS (hand in written questions) Dr. Denton Dr. Van Laar Dr. Wigley Elaine Furst, R.N., M.A. Beata Garay-Toth NOTE : Q&A refers to Question and Answer. Only written questions will be admitted. Paper will be provided and written questions collected by volunteers. No roving microphones.

19.30	Dinner for Patients attending congress. Places must be reserved in advance. (reservations to lucien [dot] paciotti [at] netplus [dot] ch).

Saturday 13 February
For FESCA representatives:

10.00 – 12.00		2010 FESCA Annual Assembly (FESCA representatives only)
12.00 – 13.00		Lunch (served in FESCA meeting room)
13.00 – 15.00		Continuation of Annual Assembly (FESCA representatives only)
For all patient organisation leaders from all countries attending congress:
15.00 – 16.00		Presentation by Scleroderma Society of Canada, with data from a recent patient survey. Speaker: Maureen Sauvé. Open discussion regarding collaboration by groups around the world.
For patient delegates:
11.00-13.00		Sightseeing walking tour of old Florence
GALA DINNER
20.00		Official Dinner for all attending the World Congress medical and patient programs. Cost of attending dinner € 50,-. All patients, patient organisation members, and medical professionals may attend. Reservations must be made at time of registration with AIM agency.

You can download Patient Program in PDF format.

You can download Final Medical and Patient Program in PDF format.

REGISTRATION:

Contact: Chantal Lemieux
Phone: 39-0-552-881 Fax: 39-0-552-480-246 or email: sclerosis2010 [at] aimgroup [dot] it

BOOKING FOR ACCOMODATIONS:

It can be done through the agency AIM whose link is to be found on the World Congress website, too.

The links are:

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FESCA

Federation of European Scleroderma Associations

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