{"id":14779,"date":"2023-06-26T18:05:09","date_gmt":"2023-06-26T16:05:09","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=14779"},"modified":"2023-06-26T18:35:26","modified_gmt":"2023-06-26T16:35:26","slug":"le-parcours-du-patient-cutis-laxa-2","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/","title":{"rendered":"Le \u00ab\u00a0Parcours du Patient\u00a0\u00bb Cutis Laxa"},"content":{"rendered":"<p style=\"margin: 0cm; margin-bottom: .0001pt; text-align: center;\" align=\"center\"><em>Le\u00a0 \u201cParcours du Patient\u00a0\u00bb cherche \u00e0 identifier les besoins qui sont sp\u00e9cifiques <\/em><\/p>\n<p style=\"margin: 0cm; margin-bottom: .0001pt; text-align: center;\" align=\"center\"><em>pour un syndrome particulier. <\/em><\/p>\n<p style=\"margin: 0cm; margin-bottom: .0001pt; text-align: center;\" align=\"center\"><em>Pour y arriver, les repr\u00e9sentants des patients <\/em><\/p>\n<p style=\"margin: 0cm; margin-bottom: .0001pt; text-align: center;\" align=\"center\"><em>ont rempli une \u00ab\u00a0cartographie\u00a0\u00bb des besoins <\/em><\/p>\n<p style=\"margin: 0cm; margin-bottom: .0001pt; text-align: center;\" align=\"center\"><em>de chacun des syndromes g\u00e9n\u00e9tiques rares qu&rsquo;ils repr\u00e9sentent, <\/em><\/p>\n<p style=\"margin: 0cm; margin-bottom: .0001pt; text-align: center;\" align=\"center\"><em>au travers des diff\u00e9rentes \u00e9tapes du Parcours du Patient.<\/em><\/p>\n<p>&nbsp;<\/p>\n<p>Ceci est la d\u00e9finition du Parcours du Patient telle que mentionn\u00e9e dans cet <a href=\"https:\/\/www.cutislaxa.org\/fr\/2020_patient-journeys_ejhg-1-2\/\">article<\/a> (en anglais) publ\u00e9 en 2019.<\/p>\n<p>C&rsquo;est un travail tr\u00e8s important et nous avons \u00e9tabli le \u00ab\u00a0Parcours du Patient\u00a0\u00bb Cutis Laxa.<\/p>\n<p>Sachant que la Cutis Laxa est une maladie tr\u00e8s complexe, avec plusieurs sous-types et diff\u00e9rents sympt\u00f4mes associ\u00e9s, nous ne pouvions pas faire un seul \u00ab\u00a0Parcours du Patient\u00a0\u00bb pour la Cutis Laxa. Nous avons regroup\u00e9 les sympt\u00f4mes associ\u00e9s des diff\u00e9rents sous-types et avons finalement \u00e9tabmi deux groupes de sous-types .<\/p>\n<p>Voici les r\u00e9sultats des deux \u00ab\u00a0Parcours du Patient\u00a0\u00bb pour les malades atteints de Cutis Laxa:<\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/fern-skin_patient-journey_cl-arteries-lungs_illustration-2-2\/\">Cutis Laxa avec sympt\u00f4mes art\u00e9riels et pulmonaires<\/a><\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/fern-skin_patient-journey_cl-neuro-squelette_illustration-2-2\/\">Cutis Laxa avec sympt\u00f4mes neurologiques et squelettiques<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Le\u00a0 \u201cParcours du Patient\u00a0\u00bb cherche \u00e0 identifier les besoins qui sont sp\u00e9cifiques pour un syndrome particulier. Pour y arriver, les repr\u00e9sentants des patients ont rempli une \u00ab\u00a0cartographie\u00a0\u00bb des besoins de chacun des syndromes g\u00e9n\u00e9tiques rares qu&rsquo;ils repr\u00e9sentent, au travers des diff\u00e9rentes \u00e9tapes du Parcours du Patient. &nbsp; Ceci est la d\u00e9finition du Parcours du Patient [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":7214,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[59,61,60,66],"tags":[],"class_list":["post-14779","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-number-mutations-fr","category-quoi-de-neuf","category-recherche","category-recherche-medecine-genetique"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Le &quot;Parcours du Patient&quot; Cutis Laxa - 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\/fr\/le-parcours-du-patient-cutis-laxa-2\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Le &quot;Parcours du Patient&quot; Cutis Laxa - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"Le\u00a0 \u201cParcours du Patient\u00a0\u00bb cherche \u00e0 identifier les besoins qui sont sp\u00e9cifiques pour un syndrome particulier. Pour y arriver, les repr\u00e9sentants des patients ont rempli une \u00ab\u00a0cartographie\u00a0\u00bb des besoins de chacun des syndromes g\u00e9n\u00e9tiques rares qu&rsquo;ils repr\u00e9sentent, au travers des diff\u00e9rentes \u00e9tapes du Parcours du Patient. &nbsp; Ceci est la d\u00e9finition du Parcours du Patient [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/\" \/>\n<meta property=\"og:site_name\" content=\"CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\" \/>\n<meta property=\"article:published_time\" content=\"2023-06-26T16:05:09+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-06-26T16:35:26+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2018\/03\/CL-Headerimage-light-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1600\" \/>\n\t<meta property=\"og:image:height\" content=\"680\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Marie-Claude\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Marie-Claude\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"Le \u00ab\u00a0Parcours du Patient\u00a0\u00bb Cutis Laxa\",\"datePublished\":\"2023-06-26T16:05:09+00:00\",\"dateModified\":\"2023-06-26T16:35:26+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/\"},\"wordCount\":182,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"Mutations\",\"Quoi de neuf\",\"Recherche\",\"Recherche - M\u00e9decine - G\u00e9n\u00e9tique\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/\",\"url\":\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/\",\"name\":\"Le \\\"Parcours du Patient\\\" Cutis Laxa - CUTIS LAXA INTERNATIONALE\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#website\"},\"datePublished\":\"2023-06-26T16:05:09+00:00\",\"dateModified\":\"2023-06-26T16:35:26+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/le-parcours-du-patient-cutis-laxa-2\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.cutislaxa.org\/fr\/accueil\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Le &#8220;Parcours du Patient&#8221; 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