4th Systemic Sclerosis World Congress

Lisbon, Portugal – February 18-20, 2016

Programme information
The Patient Programme for the Fourth World Systemic Sclerosis Congress will consist of interactive sessions of lectures and discussion between consultants and patients. Lectures will be given in English but translated into Portuguese and Spanish. Some topics will be covered in smaller groups and in different languages.

Experts will answer question such as:

• What are the options in treating SSc?
• Is the heart involved?
• Why is breathing so difficult?
• What can I do to help my digestion problems?
• What can be done about the pain in my feet?
• Should I consider a transplant?
• Can I try to get pregnant safely?
• What new therapies are available now?
• What are researchers and FESCA doing for us?
• How can I cope with my fatigue?
• Can I get help as a man with SSc?
• How can my family and I deal with depression?
• How can children with SSc learn to cope?

The patient congress will also include interactive exercise and breathing sessions, plus a round-table networking meeting for leaders of patient groups the afternoon before the congress, and plenty of networking opportunities during it.

Patient program

Thursday, February 18th:
Opening of Patient and Medical Congresses

15.00-17.00 Round-table Networking Meeting for Leaders of Patient Associations, on “Patient Participation”
18.30-22.00 Opening Lectures and Reception

Friday, February 19th:

9.00-9.10 FESCA welcome. A. Kennedy (Ireland)

9.10 – 9.30 Opening Lecture: What do we know about scleroderma now? / Prof C. Denton (UK)

9.30 – 10.30 What will help my digestive problems?
Understanding the GI tract Prof. J. Clarke (USA)
Nutrition in SSc A. Cardoso (Portugal)
Learning to Cope with Gut Problems A. Vegh (Hungary)
My Journey I. Galetti (Italy)
Chairs: A. Kennedy (IE), C. Denton (UK)

9.30 – 10.00, Parallel Session Room 3B:
New SSc Classification and Management Recommendations Prof. F. Van den Hoogen (Nl)
Chair: J. Welling (NL)

10.00 -10.30, Parallel Session Room 3B: Sclero-ID Dr. R. Dobrota (CH)
Chair: K. Fligelstone (UK)

10.30 -11.00 Coffee Break

11.00-12.00 What will Help me Breathe Easily? Is my Heart Involved?
Understanding lung problems Prof. O. Distler (CH)
PAH and the Heart Dr. A. Cordeiro (Portugal), Dr. M.J. Loureiro (Portugal)
Struggles with Breathing A. Roennow (Denmark)
Chairs: A. Portales (SP), Dr. A. Herrick (UK)

11.00-12.00, Parallel Session Room 3B:
EU projects with FESCA as partner
DeSScipher Prof. U. Mueller-Ladner (D)
The Value of Patient Participation Prof. Y. Allanore (FR)
Chair: B. Garay-Toth (Hungary)

12.00-13.00 Can I improve my sexual relations, or get pregnant safely?
Improving Sexuality Prof. A. Tincani (IT)
Is it Safe to get Pregnant? Prof. V. Steen (USA)
My New Baby C. Leite (Portugal)
Developing Sexual Confidence G. Verzi (IT)
Enjoying your Relationship R. Kanters (NL)
Chairs: A. Kennedy (IE), Dr. G. Riemekasten (D)

12.00-13.00, Parallel Session Room 3B:
For Men with SSc and Husbands of those with SSc
What will Help Men cope with SSc? Prof. S. Santos (Portugal), J. Welling (NL)
Panel Discussion in English and Portuguese, Chair: J. Welling (NL)

13.00-14.00 Lunch

14.00-14.40 What will Cure the Pain of Digital Ulcers & Calcinosis?
Our Recommendations for Treatment of Ulcers Prof. M. Matucci-Cerinic (I)
How we Care for Ulcers in a Portuguese Clinic Prof. J. Delgado Alves (Portugal)
Pain: The Greatest Struggle for Many Patients Y. Courcoux (F)
Chairs: D. Charalambous (Cy), E. Mateus (Portugal)

14.40-15.15 How do I Cope with my Facial Changes?
Changing Faces and Self-Esteem Prof. A. Tyndall (CH)
Readjusting my Life M. Sauvé (CAN)
My Story S. Sandulescu (Romania)
Chairs: B. Garay-Toth (Hungary), Prof. P. Carriera (SP)

14.00-15.00, Parallel Session Room 3B:
Juvenile Scleroderma
Moving On from SSc Dr. I. Foeldvari (D), G. Verzi (I)
Panel Discussion, Chair: K. Fligelstone (UK)

15.15-16.30 How Can I Manage SSc Myself?
Five Ways to Manage your Symptoms Dr. L. Kwakkenbos (NL)
Do Support Groups Help? V. Delisle (CAN)
Painful Symptoms that Cannot be Measured Dr. Jason Lee (CAN)
Mind & Body Strength Dr. L.A. Saketkoo (USA)
Chairs: N. Paciotti (CH), A. Kennedy (IE)

15.00-15.30, Parallel Session Room 3B
Caring for your Teeth in SSc Dr. A. Pequeno (in Portuguese)
Chair: H. Gaspar (Portugal), A. Portales (SP)

15.30-16.30, Parallel Session Room 3B
Scleroquizz Game (in English and French) Nurse A. Noullez (F), Nurse G. Wojtasik (F)
9.00-15.00, Parallel Session Room 3A: Interactive Workshops — Exercises to Improve Breathing and Facial Flexibility
Therapists: J. Brozd PT (Croatia), Viktorija Mišura PT (Croatia) and S. Roskar (Croatia)

9.30-10.10 Breathing Exercises;
10.15-10.45 Face Exercises;
11.00-11.45 Face Exercises;
12.00-13.00 Breathing Exercises;

14.00-15.00 “Ask a Physiotherapist” – demonstration of exercises in response to questions.

Saturday, February 20th:

9.00-10.00 “Meet the Professor”: Answers to your questions in your own language

in English, Room 3A Prof.
Maureen Mayes (USA) & Prof. Patricia Carriera (SP) (translation into Portuguese, French, Spanish),
Chair: A. Portales (SP)

in German, Room 3C
Prof. U. Müller-Ladner (D),
Chair: G. Niehaus (D)

in Italian, Room 3B
Prof. M. Matucci-Cerinic (I),
Chair: G. Tassini (I)

10.00-11.00 What is Research doing for Me? What New Therapies can I try?
The Hope of Systemic Drugs Prof. C. Denton (UK)
Considering Stem-Cell Transplants Prof. J. Van Laar (NL)
My Lung Transplant A. Martin (CH)
My Stem-Cell Transplant R. Kanters (NL)
Chairs: J. Welling (NL), Prof. A. Tyndall (CH)

11.00-11.30 coffee break

11.30-12.00 After 10 years with SSc, What Can I Expect?
Predicting the Future with SSc Dr. Jason Lee (CAN)
A Long Life With SSc K. Fligelstone (UK)
Chair: A. Roennow (Denmark)

12.00-13.00 Coping: How can my family and I manage SSc better?
Dealing with Chronic Fatigue Dr. J. Poole (USA)
Breathing Exercises Dr. J.Poole (USA)
How to share SSc with a loved one H. and I. Lever (Sweden)
Finding your way as a single mother: M. Gaafar (CH)
A Meditation for stress relief: Dr. L. A. Saketkoo (USA)
Chair: A. Kennedy (IE)

10.30-11.30, Parallel Session in Room 3B:
Wax Bath demonstrations Dr. W. Gregory PT (UK)

11.30-12.30, Parallel Session in Room 3B:
Hand exercises Dr. W. Gregory PT (UK)

10.00-11.00 and 11.00-12.00, Parallel Sessions in Room 3A
Screening of film “Beneath the Surface” Christy McCaffrey (USA)

12.00-12.30, Parallel Session in Room 3A:
Nutrition in SSc (in Portuguese) A. Cardoso (Portugal)
Chair: H. Gaspar (Portugal)

13.00 CLOSURE OF CONGRESS

13.30-15.30 FESCA MEETING OF ALL REPRESENTATIVES

SIMULTANEOUS TRANSLATION OFFERED IN ROOM 3C

PATIENT POSTER DISPLAY AREA

FILM BY CHRISTY McCAFFREY (twice shown in Room 3A)