Pour plus d’infos : www.marfan.be/absm2/ |
L’Association Belge du Syndrome de Marfan est une ASBL fondée en 1999 par des patients et leurs familles. Avec l’aide de médecins, ils souhaitent à la fois sensibiliser et fournir des renseignements exacts sur le syndrome de Marfan, maladie dite « rare », au public belge, principalement francophone, aux personnes atteintes et à leur famille ainsi qu’aux professionnels de la santé. Ils favorisent également la création de groupes d’entraide et soutiennent la recherche médicale. Cette importante association de patients constitue un espace exceptionnel d’informations, de réunions, de discussions, d’échanges et de consultations pluridisciplinaires entre chercheurs. Le syndrome de Marfan est une maladie génétique qui atteint les tissus conjonctifs. Décrit pour la première fois en 1896, c’est le Dr Antoine Marfan qui lui donne son nom. Chez les personnes atteintes du syndrome, l’affaiblissement du tissu conjonctif touche surtout le système cardio-vasculaire, le squelette, les ligaments et les yeux. L’établissement du diagnostique constitue un processus complexe qui demande l’intervention de plusieurs spécialistes. Des personnages aussi célèbres que Niccolo Paganini, Abraham Lincoln, ou encore Sergei Rachmaninoff auraient souffert de ce syndrome.
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L’Association Belge du Syndrome de Marfan
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