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- W2060114882 abstract "The role of patient groups has grown steadily stronger since the first General Meeting of cancer patients in 1999 and the emergence of the rare diseases issue in the mid-eighties. This article demonstrates the role of a patient group (SOS DESMOIDE) gathering people suffering from a rare disease (the desmoid tumor) in the stimulation of scientific and medical research as well as the improvement of patient care, information and support provided to patients. It substantiates these elements with numerous socio-medico-psychological surveys, scientific publications and medical research implemented by medical teams and supported, even sometimes initiated, by SOS DESMOIDE. This research effort illustrates the significant impact of a partnership between patients and physicians-researchers on medical and scientific breakthroughs in a specific pathological field.Le rôle des associations de patients n’a cessé de se renforcer depuis les premiers états généraux des malades du cancer en 1999 et l’émergence de la problématique des maladies rares au milieu des années quatre-vingts. Cet article illustre le rôle d’une association de patients (SOS DESMOIDE) atteints d’une maladie rare (la tumeur desmoïde) en matière de recherche scientifique et médicale mais aussi en termes d’amélioration des prises en charge, de l’information et du soutien aux patients. Il est étayé par de nombreuses enquêtes socio-médico-psychologiques, publications scientifiques et travaux médicaux mis en œuvre par des équipes médicales et soutenus, parfois même initiés, par l’association SOS DESMOIDE. Ce travail de recherche illustre l’impact considérable que peut avoir un partenariat entre des patients et des médecins-chercheurs sur les avancées médicales et scientifiques observées dans un domaine pathologique donné." @default.
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- W2060114882 date "1998-11-01" @default.
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- W2060114882 title "Plasma corticotropin levels in patients with familial amyloidotic polyneuropathy during liver transplantation" @default.
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- W2060114882 doi "https://doi.org/10.1016/s0009-9120(98)00068-x" @default.
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