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SOS DESMOIDE ASSOCIATION Marie Podevin CTOS Meeting November 21 st , Boca Raton, Florida

SOS DESMOIDE ASSOCIATION Marie Podevin CTOS Meeting November 21 st , Boca Raton, Florida. STRUCTURE http://www.sos-desmoide.asso.fr. Date of creation : November, 1998 Juridical status : non profit status Board : President & founder : Marie Podevin General secretary : Dr Laurent Mignot

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SOS DESMOIDE ASSOCIATION Marie Podevin CTOS Meeting November 21 st , Boca Raton, Florida

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  1. SOS DESMOIDE ASSOCIATIONMarie PodevinCTOS MeetingNovember 21st, Boca Raton, Florida

  2. STRUCTUREhttp://www.sos-desmoide.asso.fr • Date of creation: November, 1998 • Juridical status : non profit status • Board: • President & founder : Marie Podevin • General secretary : Dr Laurent Mignot • Treasurer : Daniel Podevin

  3. ORGANIZATION • Members : +/- 250-300 • Patientswho have contacted us : ~ 240 • Core members : ~10 (including 5 physicians) • Patient’s Committee • Psychological support structure • Finances : subscription, donation

  4. MAIN GOALS • Break patients’ isolation • Inform on illness, bring psychological support • Make patients contribute to research • Collect, share, disseminate knowledge • Gather patients’ medical stories • Gather physicians’ experience • Stimulate and promote research • Launch an active scientific group • Help the development of research programs

  5. PATIENTS & P HYSICIANS & FAMILIES RESEARCHERS DIALOG UE P AR TNERSHIP SY NERGY ROLES SOS DESMOIDE ASSOCIATION A boost fo r Res earch into Rare Diseases < Active group of patients & physicians < Patient s ’ Committee < Psychological help structure & support network SOS DES MOIDE NETWORK BREAK INCREASE CONTRIBUTE TO PATIENTS ’ KNOWLEDGE RESEARCH and SHARE it ISOLATION A strategy for breaking the vicious circle of a rare disease Collection of tissues

  6. MAIN REALIZATIONS • Creation of a collection of human material • Integration of ASD into scientific groups • GSF-GETO • Initiation of studies on surgery and genetics • Contribution to clinical trial information note • FNCLCC • Invitation of physicians at our general assembly (Radiation, chemotherapy, surgery…) • Organization of a scientific meeting (1999)

  7. FUTURE PROJECTS & NEW QUESTIONS • Studies in epidemiology • Reference centers • Library of scientific publications • Internet web site for physicians • web page for patients from all over the world

  8. WE NEED YOUR ADVICE AND YOUR HELP • Help from physicians to : • Help us to direct & support the patients • Help patients from abroad to create their asso • Help us to increase knowledge & research on desmoids

  9. Thank you To contact us mpodevin@aol.com http://www.sos-desmoide.asso.fr

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