Apaiser S&C, association reconnue d’int\u00e9r\u00eat g\u00e9n\u00e9ral et agr\u00e9\u00e9e\u00a0au niveau national par le minist\u00e8re de la Sant\u00e9 \u00e0 repr\u00e9senter les usagers dans les instances hospitali\u00e8res, est l’association repr\u00e9sentative des patients atteints de malformation de Chiari et de Syringomy\u00e9lie, deux maladies neurologiques rares. Elle organise chaque ann\u00e9e un colloque ouvert \u00e0 tous, qui comprend 3 demi-journ\u00e9es respectivement consacr\u00e9es :<\/p>\n\n\n\n
Comme en 2025, Apaiser S&C a demand\u00e9 \u00e0 Enteka de prendre en charge l’animation de la deuxi\u00e8me demi-journ\u00e9e, en organisant une formation sur \u00ab\u00a0l’\u00e9cosyst\u00e8me des maladies rares\u00a0\u00bb. <\/p>\n\n\n\n
Que signifie le terme de \u00ab\u00a0maladie rare\u00a0\u00bb et que ne signifie-t-il pas ? Comment cet objet s\u00e9mantique s’est-il impos\u00e9 dans le d\u00e9bat public ? Comment est-il pris en compte depuis vingt ans dans la l\u00e9gislation fran\u00e7aise ? Quels sont les diff\u00e9rents acteurs impliqu\u00e9s dans la recherche et la prise en charge m\u00e9dicale ? Et quel est le r\u00f4le de chacun ? <\/p>\n\n\n\n
Cette formation fera le point sur l’histoire du combat collectif pour la reconnaissance des maladies rares et donnera des cl\u00e9s tr\u00e8s concr\u00e8tes pour mieux comprendre cet \u00e9cosyst\u00e8me et le r\u00f4le que les patients peuvent y jouer au travers des associations repr\u00e9sentatives.<\/p>\n\n\n\n
<\/p>\n","protected":false},"excerpt":{"rendered":"
Pour la deuxi\u00e8me ann\u00e9e cons\u00e9cutive, Enteka se voit confier l’animation du colloque annuel de l’association Apaiser S&C. 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