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Verdenskonference 2012


Den 2. verdenskonference indenfor Systemisk Sklerodermi blev afholdt i Madrid i perioden 2.-4. februar, 2012. Det var 2 konferencer i ét - en for læger og andet sundhedsfagligt personale, og del for patienter.

 

Der var deltagere fra hele verden - 260 patienter fordelt over 29 nationer. Langvejs fra kom de rejsende, lige fra Australien til Mexico til Chile til Canada og ikke mindst mange europæiske lande, heriblandt også Norge, Sverige, Finland plus 6 fra Danmark. 




Programmet var tætpakket med indlæg indenfor mange emner - nedenfor kan du se programmet (på engelsk) samt hente de fleste præsentationer fra oplægsholderne (på engelsk):

 

Friday, February 3, 2012

09.00-09.30 What is Scleroderma?
09.00 Fesca Welcome & Chair (Ann Kennedy - IRL)  annkennedy.pdf (2.4 MB)
09.05 What is Scleroderma, and Why me? (Oliver Distler - CH)  oliverdistler.pdf (1.2 MB)
09.20 Describing & Measuring systemic sclerosis for the WHO (Leslie Ann Saketkoo - USA)  leslieann.pdf (5.7 MB)

09.30-10.40 The Gastrointestinal Tract
Chair: Nemanja Damjanov - CS, Fesca Co-chair: Ann Kennedky - IRL
09.30 Gastrointestinal involvement (Dinesh Khanna - USA) dineshkhanna.pdf (998.6 KB)
09.50 - Nutrition therapy in systemic sclerosis (Gabriela Riemekasten - D)  gabrielariemekasten.pdf (1.1 MB)
10.10 Questions to the Panel

10.40-11.00 How to Use Survey Results (Maureen Sauvé/Scleroderma Society of Canada - CAN) maureensauve.pdf (3.2 MB)

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)  ulfmuller.pdf (511.1 KB)
11.50 Digital Ulcers (Marco Matucci-Cerinic - I)  marcomatucci.pdf (1.4 MB)
12.10 Wound Care (Barbara Gemmell - AUS)  barbaragemmell.pdf (3.5 MB)

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) lolcguillevin.pdf (4.1 MB)
14.25 Problems with the heart (Yannick Allanore - F) yannickallanore.pdf (2.4 MB)
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) kimfligelstone.pdf (160.7 KB)
15.45 Coming to Terms with my Life with systemic sclerosis (Annelise Roennow - DK)  annelise.pdf (351.1 KB)
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)  alantyndall.pdf (3 MB)
09.25 The patient perspective on Stem Cell transplant (Gabriella Varzi - I)  gabriela.pdf (179.8 KB)
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)  ulrichwalker.pdf (1.1 MB)
10.15 Pregnancy (Antonio Brucato - I)  brucato.pdf (1.1 MB)
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 Juveline Scleroderma (Ivan Foeldvari - D)  ivanfoeldvari.pdf (2.6 MB)

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)  lindakwakkenbos.pdf (553.1 KB)
14.20 Achieving Self-esteem (Catarina Leite - P)  achievingselfesteem.pdf (533.9 KB)
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) gregory.pdf (1.4 MB)
15.50 Occupational therapist (Janet Poole - USA) janetpoole.pdf (1.5 MB)
16.10 Physiotherapust and FESCA member (Jadranka Brozd - HR) who will lead relaxation exercises jadrankab.pdf (4.4 MB)





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FESCA Dansk Sklerodermi og Raynaud forening er medlem af FESCA, the Federation for European Scleroderma Associations. Læs mere