{"id":13546,"date":"2022-12-27T13:42:19","date_gmt":"2022-12-27T12:42:19","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=13546"},"modified":"2023-02-06T09:31:40","modified_gmt":"2023-02-06T08:31:40","slug":"202209-mme-marie-claude-boiteux_des-patients-et-des-accompagnants","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/202209-mme-marie-claude-boiteux_des-patients-et-des-accompagnants\/","title":{"rendered":"Mme Marie-Claude Boiteux (Pr\u00e9sidente Cutis Laxa Internationale, France) : Perspectives des Patients et des Accompagnants : Le parcours des patients"},"content":{"rendered":"

\"\"<\/p>\n

Le \u00ab\u00a0Parcours du Patient\u00a0\u00bb est un t\u00e9moignage personnel qui refl\u00e8te l\u2019histoire et les besoins des patients atteints d\u2019une maladie rare.<\/p>\n

\"\" \"\"<\/p>\n

Il repr\u00e9sente une perspective collective sur le fardeau de la maladie et les besoins de personnes qui ont l\u2019exp\u00e9rience de premi\u00e8re main du v\u00e9cu avec une maladie rare.<\/p>\n

\"\" \"\"<\/p>\n

C\u2019est un document de r\u00e9f\u00e9rence de base pour d\u00e9velopper un parcours des soins de sant\u00e9 et des guides pour adresser les besoins identifi\u00e9s.<\/p>\n

\"\" \"\"<\/p>\n

La Cutis Laxa est une maladie si h\u00e9t\u00e9rog\u00e8ne qu\u2019on ne peut pas cr\u00e9er un seul Parcours du Patient ; il en faut deux pour repr\u00e9senter les besoins sp\u00e9cifiques des patients avec les diff\u00e9rents types de Cutis Laxa.<\/p>\n","protected":false},"excerpt":{"rendered":"

Le \u00ab\u00a0Parcours du Patient\u00a0\u00bb est un t\u00e9moignage personnel qui refl\u00e8te l\u2019histoire et les besoins des patients atteints d\u2019une maladie rare. Il repr\u00e9sente une perspective collective sur le fardeau de la maladie et les besoins de personnes qui ont l\u2019exp\u00e9rience de premi\u00e8re main du v\u00e9cu avec une maladie rare. C\u2019est un document de r\u00e9f\u00e9rence de base […]<\/p>\n","protected":false},"author":2,"featured_media":13517,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[67,61,60,66,64],"tags":[],"class_list":["post-13546","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-photos-fr","category-quoi-de-neuf","category-recherche","category-recherche-medecine-genetique","category-rencontres-evenements-et-manifestations"],"yoast_head":"\nMme Marie-Claude Boiteux (Pr\u00e9sidente Cutis Laxa Internationale, France) : Perspectives des Patients et des Accompagnants : Le parcours des patients - CUTIS LAXA INTERNATIONALE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cutislaxa.org\/202209-mrs-marie-claude-boiteux-patients-and-caregivers-perspectives\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Mme Marie-Claude Boiteux (Pr\u00e9sidente Cutis Laxa Internationale, France) : Perspectives des Patients et des Accompagnants : Le parcours des patients - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"Le \u00ab\u00a0Parcours du Patient\u00a0\u00bb est un t\u00e9moignage personnel qui refl\u00e8te l\u2019histoire et les besoins des patients atteints d\u2019une maladie rare. Il repr\u00e9sente une perspective collective sur le fardeau de la maladie et les besoins de personnes qui ont l\u2019exp\u00e9rience de premi\u00e8re main du v\u00e9cu avec une maladie rare. 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