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

Date of creation : November, 1998 Date of creation : November, 1998 Juridical status : non profit status Juridical status : non profit status Board: Board: President & founder : Marie Podevin President & founder : Marie Podevin General secretary : Dr Laurent Mignot General secretary : Dr Laurent Mignot Treasurer : Daniel Podevin Treasurer : Daniel Podevin STRUCTURE STRUCTURE

ORGANIZATION Members : +/ Members : +/ Patients who have contacted us : ~ 240 Patients who have contacted us : ~ 240 Core members : ~ 10 (including 5 physicians) Core members : ~ 10 (including 5 physicians) Patient’s Committee Patient’s Committee Psychological support structure Psychological support structure Finances : subscription, donation Finances : subscription, donation

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

A strategy for breaking the vicious circle of a rare disease CONTRIBUTE TO RESEARCH BREAK PATIENTS’ ISOLATION INCREASE KNOWLEDGE and SHARE it SOS DESMOIDE NETWORK  Activegroup of patients & physicians  Patients’ Committee  Psychological help structure & support network PATIENTS & FAMILIES PHYSICIANS& RESEARCHERS DIALOGUE PARTNERSHIP SYNERGY ROLES SOS DESMOIDE ASSOCIATION A boost for Research into Rare Diseases Collection of tissues

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

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

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

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