{"id":88,"date":"2022-01-26T12:30:45","date_gmt":"2022-01-26T11:30:45","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=88"},"modified":"2024-12-09T15:35:42","modified_gmt":"2024-12-09T14:35:42","slug":"patient-journeys","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/fr\/guidelines\/patient-journeys\/","title":{"rendered":"Parcours des patients"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Les \u00ab parcours de patients \u00bb sont des guides r\u00e9dig\u00e9s par les patients eux-m\u00eames, qui d\u00e9crivent une maladie rare \u00e0 travers les <strong>exp\u00e9riences quotidiennes<\/strong> et<strong> regard sur la vie<\/strong> des personnes atteintes de cette pathologie. En d'autres termes, elles d\u00e9crivent le parcours clinique type suivi par les patients atteints d'une pathologie donn\u00e9e.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Les parcours patients ont pour but de fournir rapidement des informations faciles \u00e0 comprendre \u00e0 tous les types de publics. C\u2019est pourquoi ils sont g\u00e9n\u00e9ralement tr\u00e8s courts et tr\u00e8s visuels (voir l\u2019exemple ci-dessous). Ils s\u2019adressent \u00e0 :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>les patients eux-m\u00eames \u2013 l'information est essentielle pour leur donner les moyens d'agir et les impliquer dans la prise de d\u00e9cision concernant leurs soins ;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>les professionnels de sant\u00e9 tels que les infirmiers, les psychologues, les m\u00e9decins g\u00e9n\u00e9ralistes ou tout autre professionnel qui ne conna\u00eet pas bien une maladie rare donn\u00e9e ; <\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>le grand public qui souhaite comprendre ce que sont les maladies rares et comment vivent les personnes qui en sont atteintes.<\/li>\n<\/ul>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"799\" height=\"601\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png\" alt=\"\" class=\"wp-image-6218\" style=\"width:309px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png 799w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454-600x451.png 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454-768x578.png 768w\" sizes=\"auto, (max-width: 799px) 100vw, 799px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Exemple de parcours de soins d'un patient atteint du syndrome de Prader-Willi (t\u00e9l\u00e9chargeable ci-dessous)<\/em><\/p>\n\n\n\n<div style=\"height:43px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Le groupe de travail sur les lignes directrices ITHACA s'att\u00e8le \u00e0 la r\u00e9daction <strong>Nouveaux parcours de soins pour les malformations rares ou les troubles neurod\u00e9veloppementaux<\/strong>. \u00c0 ce jour, l'ERN a publi\u00e9 des parcours de soins pour les maladies rares suivantes. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nous encourageons les patients \u00e0 les utiliser et \u00e0 les transmettre \u00e0 tous les professionnels de sant\u00e9 qu'ils sont susceptibles de rencontrer, et nous invitons les professionnels de sant\u00e9 eux-m\u00eames \u00e0 les partager avec leurs patients.<\/p>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-5.pdf\"><div class=\"documents-body\">SYNDROME DE PITT-HOPKINS<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-3.pdf\"><div class=\"documents-body\">SYNDROME DE PRADER-WILLI<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-1.pdf\"><div class=\"documents-body\">SYNDROME DE RETT<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-4.pdf\"><div class=\"documents-body\">SPINA BIFIDA<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-2.pdf\"><div class=\"documents-body\">SYNDROME DE WILLIAMS<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<div style=\"height:43px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">L'ERN a \u00e9galement publi\u00e9 un \u00ab parcours du patient \u00bb qui ne se rapporte pas \u00e0 une pathologie particuli\u00e8re, mais qui vise \u00e0 expliquer le <strong>les besoins communs \u00e0 tous les patients atteints d'anomalies cong\u00e9nitales rares ou de troubles neurod\u00e9veloppementaux rares<\/strong>:<\/p>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Patient-Journey-common-needs.pdf\"><div class=\"documents-body\">ITHACA \u201c BESOINS COMMUNS \u201d DES PATIENTS\u201d<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Patient journeys are guides written by patient themselves that describe a rare disorder through the day-to-day experiences and life-lens of those living with the condition. In other words, they depict what is, for a specific condition, the typical clinical pathway patients go through. Patient Journeys are meant to quickly provide easy-to-grasp information to all kinds [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":3042,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-88","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Patient Journeys - ERN ITHACA<\/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:\/\/ern-ithaca.eu\/fr\/guidelines\/patient-journeys\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Patient Journeys - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Patient journeys are guides written by patient themselves that describe a rare disorder through the day-to-day experiences and life-lens of those living with the condition. In other words, they depict what is, for a specific condition, the typical clinical pathway patients go through. Patient Journeys are meant to quickly provide easy-to-grasp information to all kinds [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/fr\/guidelines\/patient-journeys\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2024-12-09T14:35:42+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png\" \/>\n\t<meta property=\"og:image:width\" content=\"799\" \/>\n\t<meta property=\"og:image:height\" content=\"601\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/\",\"name\":\"Patient Journeys - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2024\\\/10\\\/Capture-decran-2024-10-28-220454.png\",\"datePublished\":\"2022-01-26T11:30:45+00:00\",\"dateModified\":\"2024-12-09T14:35:42+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/#primaryimage\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2024\\\/10\\\/Capture-decran-2024-10-28-220454.png\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2024\\\/10\\\/Capture-decran-2024-10-28-220454.png\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/patient-journeys\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Guidelines\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Patient Journeys\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"name\":\"ERN ITHACA\",\"description\":\"WELCOME TO ERN-ITHACA WEBSITE!\",\"publisher\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/ern-ithaca.eu\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\",\"name\":\"ERN-ITHACA\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"width\":454,\"height\":172,\"caption\":\"ERN-ITHACA\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/x.com\\\/ERNIthaca\",\"https:\\\/\\\/www.linkedin.com\\\/company\\\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\\\/?viewAsMember=true\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Patient Journeys - ERN ITHACA","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/ern-ithaca.eu\/fr\/guidelines\/patient-journeys\/","og_locale":"fr_FR","og_type":"article","og_title":"Patient Journeys - ERN ITHACA","og_description":"Patient journeys are guides written by patient themselves that describe a rare disorder through the day-to-day experiences and life-lens of those living with the condition. In other words, they depict what is, for a specific condition, the typical clinical pathway patients go through. Patient Journeys are meant to quickly provide easy-to-grasp information to all kinds [&hellip;]","og_url":"https:\/\/ern-ithaca.eu\/fr\/guidelines\/patient-journeys\/","og_site_name":"ERN ITHACA","article_modified_time":"2024-12-09T14:35:42+00:00","og_image":[{"width":799,"height":601,"url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png","type":"image\/png"}],"twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","twitter_misc":{"Dur\u00e9e de lecture estim\u00e9e":"1 minute"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/","url":"https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/","name":"Patient Journeys - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"primaryImageOfPage":{"@id":"https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/#primaryimage"},"image":{"@id":"https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/#primaryimage"},"thumbnailUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png","datePublished":"2022-01-26T11:30:45+00:00","dateModified":"2024-12-09T14:35:42+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/#primaryimage","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png"},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/guidelines\/patient-journeys\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ern-ithaca.eu\/"},{"@type":"ListItem","position":2,"name":"Guidelines","item":"https:\/\/ern-ithaca.eu\/guidelines\/"},{"@type":"ListItem","position":3,"name":"Patient Journeys"}]},{"@type":"WebSite","@id":"https:\/\/ern-ithaca.eu\/#website","url":"https:\/\/ern-ithaca.eu\/","name":"ERN ITHACA","description":"WELCOME TO ERN-ITHACA WEBSITE!","publisher":{"@id":"https:\/\/ern-ithaca.eu\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ern-ithaca.eu\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/ern-ithaca.eu\/#organization","name":"ERN-ITHACA","url":"https:\/\/ern-ithaca.eu\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","width":454,"height":172,"caption":"ERN-ITHACA"},"image":{"@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/x.com\/ERNIthaca","https:\/\/www.linkedin.com\/company\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\/?viewAsMember=true"]}]}},"_links":{"self":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages\/88","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/comments?post=88"}],"version-history":[{"count":25,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages\/88\/revisions"}],"predecessor-version":[{"id":6569,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages\/88\/revisions\/6569"}],"up":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages\/3042"}],"wp:attachment":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/media?parent=88"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}