{"id":725,"date":"2021-02-28T11:37:21","date_gmt":"2021-02-28T16:37:21","guid":{"rendered":"https:\/\/ecogene21.org\/?post_type=nouvelle&#038;p=725"},"modified":"2025-10-21T16:18:17","modified_gmt":"2025-10-21T20:18:17","slug":"tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares","status":"publish","type":"nouvelle","link":"https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/","title":{"rendered":"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares"},"content":{"rendered":"<p class=\"paragraph textModule textModule--type-paragraph \">Pour les personnes touch\u00e9es par une maladie rare, les d\u00e9fis actuels n\u2019ont fait qu\u2019exacerber leur tr\u00e8s grande vuln\u00e9rabilit\u00e9 et retarder leur acc\u00e8s aux diagnostics, aux soins de sant\u00e9 et aux traitements. Plusieurs patients se sont retrouv\u00e9s plus isol\u00e9s que jamais, sans ressources ni soutien.<\/p>\n<p class=\"paragraph textModule textModule--type-paragraph \">Au Qu\u00e9bec, environ 500\u00a0000\u00a0personnes sont touch\u00e9es par une maladie rare. Plus de 7000\u00a0maladies rares sont r\u00e9pertori\u00e9es \u00e0 travers le monde et, en th\u00e9orie, n\u2019importe laquelle peut toucher des Qu\u00e9b\u00e9cois.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Pour les personnes touch\u00e9es par une maladie rare, les d\u00e9fis actuels n\u2019ont fait qu\u2019exacerber leur tr\u00e8s grande vuln\u00e9rabilit\u00e9 et retarder leur acc\u00e8s aux diagnostics, aux soins de sant\u00e9 et aux traitements. Plusieurs patients se sont retrouv\u00e9s plus isol\u00e9s que jamais, sans ressources ni soutien. Au Qu\u00e9bec, environ 500\u00a0000\u00a0personnes sont touch\u00e9es par une maladie rare. Plus [&hellip;]<\/p>\n","protected":false},"featured_media":0,"template":"","meta":{"_acf_changed":false,"inline_featured_image":false},"categorie":[14],"class_list":["post-725","nouvelle","type-nouvelle","status-publish","hentry","categorie-actualites"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares - ECOGENE-21<\/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:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares - ECOGENE-21\" \/>\n<meta property=\"og:description\" content=\"Pour les personnes touch\u00e9es par une maladie rare, les d\u00e9fis actuels n\u2019ont fait qu\u2019exacerber leur tr\u00e8s grande vuln\u00e9rabilit\u00e9 et retarder leur acc\u00e8s aux diagnostics, aux soins de sant\u00e9 et aux traitements. Plusieurs patients se sont retrouv\u00e9s plus isol\u00e9s que jamais, sans ressources ni soutien. Au Qu\u00e9bec, environ 500\u00a0000\u00a0personnes sont touch\u00e9es par une maladie rare. Plus [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"ECOGENE-21\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/ecogene21\/\" \/>\n<meta property=\"article:modified_time\" content=\"2025-10-21T20:18:17+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\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:\\\/\\\/ecogene21.org\\\/fr\\\/nouvelle\\\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\\\/\",\"url\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/nouvelle\\\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\\\/\",\"name\":\"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares - ECOGENE-21\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/#website\"},\"datePublished\":\"2021-02-28T16:37:21+00:00\",\"dateModified\":\"2025-10-21T20:18:17+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/nouvelle\\\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ecogene21.org\\\/fr\\\/nouvelle\\\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/nouvelle\\\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/#website\",\"url\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/\",\"name\":\"ECOGENE-21\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/#organization\",\"name\":\"ECOGENE-21\",\"url\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/ecogene21.org\\\/wp-content\\\/uploads\\\/2025\\\/07\\\/Ecogene_Logo.svg\",\"contentUrl\":\"https:\\\/\\\/ecogene21.org\\\/wp-content\\\/uploads\\\/2025\\\/07\\\/Ecogene_Logo.svg\",\"width\":\"1024\",\"height\":\"1024\",\"caption\":\"ECOGENE-21\"},\"image\":{\"@id\":\"https:\\\/\\\/ecogene21.org\\\/fr\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/www.facebook.com\\\/ecogene21\\\/\",\"https:\\\/\\\/ca.linkedin.com\\\/company\\\/ecogene-21\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares - ECOGENE-21","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:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/","og_locale":"fr_FR","og_type":"article","og_title":"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares - ECOGENE-21","og_description":"Pour les personnes touch\u00e9es par une maladie rare, les d\u00e9fis actuels n\u2019ont fait qu\u2019exacerber leur tr\u00e8s grande vuln\u00e9rabilit\u00e9 et retarder leur acc\u00e8s aux diagnostics, aux soins de sant\u00e9 et aux traitements. Plusieurs patients se sont retrouv\u00e9s plus isol\u00e9s que jamais, sans ressources ni soutien. Au Qu\u00e9bec, environ 500\u00a0000\u00a0personnes sont touch\u00e9es par une maladie rare. Plus [&hellip;]","og_url":"https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/","og_site_name":"ECOGENE-21","article_publisher":"https:\/\/www.facebook.com\/ecogene21\/","article_modified_time":"2025-10-21T20:18:17+00:00","twitter_card":"summary_large_image","twitter_misc":{"Dur\u00e9e de lecture estim\u00e9e":"1 minute"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/","url":"https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/","name":"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares - ECOGENE-21","isPartOf":{"@id":"https:\/\/ecogene21.org\/fr\/#website"},"datePublished":"2021-02-28T16:37:21+00:00","dateModified":"2025-10-21T20:18:17+00:00","breadcrumb":{"@id":"https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/ecogene21.org\/fr\/nouvelle\/tenir-bon-en-attendant-la-strategie-quebecoise-sur-les-maladies-rares\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Accueil","item":"https:\/\/ecogene21.org\/fr\/"},{"@type":"ListItem","position":2,"name":"Tenir bon, en attendant la strat\u00e9gie qu\u00e9b\u00e9coise sur les maladies rares"}]},{"@type":"WebSite","@id":"https:\/\/ecogene21.org\/fr\/#website","url":"https:\/\/ecogene21.org\/fr\/","name":"ECOGENE-21","description":"","publisher":{"@id":"https:\/\/ecogene21.org\/fr\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ecogene21.org\/fr\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/ecogene21.org\/fr\/#organization","name":"ECOGENE-21","url":"https:\/\/ecogene21.org\/fr\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/ecogene21.org\/fr\/#\/schema\/logo\/image\/","url":"https:\/\/ecogene21.org\/wp-content\/uploads\/2025\/07\/Ecogene_Logo.svg","contentUrl":"https:\/\/ecogene21.org\/wp-content\/uploads\/2025\/07\/Ecogene_Logo.svg","width":"1024","height":"1024","caption":"ECOGENE-21"},"image":{"@id":"https:\/\/ecogene21.org\/fr\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/ecogene21\/","https:\/\/ca.linkedin.com\/company\/ecogene-21"]}]}},"_links":{"self":[{"href":"https:\/\/ecogene21.org\/fr\/wp-json\/wp\/v2\/nouvelle\/725","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ecogene21.org\/fr\/wp-json\/wp\/v2\/nouvelle"}],"about":[{"href":"https:\/\/ecogene21.org\/fr\/wp-json\/wp\/v2\/types\/nouvelle"}],"wp:attachment":[{"href":"https:\/\/ecogene21.org\/fr\/wp-json\/wp\/v2\/media?parent=725"}],"wp:term":[{"taxonomy":"categorie","embeddable":true,"href":"https:\/\/ecogene21.org\/fr\/wp-json\/wp\/v2\/categorie?post=725"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}