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GESED asbl - Accueil

GESED - Groupe d'Entraide des Syndromes d'Ehlers-Danlos

Categories: Non-Profit/Advocacy/NGO, General Organizations
Topics: collagène, danlos, ehlers, gesed, gesed asbl, hyperlaxité, maladie, orpheline, rare, sed, syndrome

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gersed.com
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Site de l'association du Groupe d’Etudes et de Recherches du Syndrome d’Ehlers-Danlos (GERSED), structure coordonnant les efforts d‘amélioration du diagnostic, du traitement et de la recherche sur le syndrome d’Ehlers-Danlos.
Le SED est une pathologie de l'ensemble du tissu conjonctif ,d'origine génétique, avec altération des collagènes.
Ce n’est plus une « maladie rare » mais un syndrome fréquent, méconnu, ignoré, voire refusé, dont le diagnostic est très tardif.
Le diagnostic repose sur la seule clinique, ce qui, est parfois difficile à admettre à notre époque d'inflation de l'imagerie et de la biologie ( qui sont normales dans ce cas).
Nous vous proposerons ici les outils d’aide au diagnostic du syndrome ainsi que leur mode d’emploi.
Il existe pourtant des traitements symptomatiques spécifiques efficaces quand le diagnostic est posé.

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