{"id":3674404,"date":"2023-03-21T14:50:31","date_gmt":"2023-03-21T13:50:31","guid":{"rendered":"https:\/\/www.chu-poitiers.fr\/?page_id=3674404"},"modified":"2026-03-09T15:41:34","modified_gmt":"2026-03-09T14:41:34","slug":"informations-generales-sur-les-maladies-rares","status":"publish","type":"page","link":"https:\/\/www.chu-poitiers.fr\/en\/maladies-rares-accueil\/informations-generales-sur-les-maladies-rares\/","title":{"rendered":"Informations g\u00e9n\u00e9rales sur les maladies rares"},"content":{"rendered":"<div class=\"wpb-content-wrapper\">[vc_row][vc_column width=&#8221;1\/3&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-info-circle&#8221; color=&#8221;custom&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679322479786{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; custom_color=&#8221;#23b093&#8243;][vc_column_text]\n<p style=\"text-align: center;\">Une <strong>maladie rare<\/strong> est une maladie qui atteint <strong>moins d\u2019une personne sur 2 000<\/strong> en population g\u00e9n\u00e9rale.<\/p>\n[\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-pie-chart&#8221; color=&#8221;custom&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679322575768{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; custom_color=&#8221;#e71d73&#8243;][vc_column_text]\n<p style=\"text-align: center;\"><strong>En France, 3 millions de personnes <\/strong>sont atteintes par l\u2019une des <strong>7 000 maladies rares<\/strong> connues \u00e0 ce jour.<\/p>\n[\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-users&#8221; color=&#8221;custom&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679322597361{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; custom_color=&#8221;#44b5e8&#8243;][vc_column_text]\n<p style=\"text-align: center;\"><strong>240 associations<\/strong> de personnes atteintes de maladies rares sont rassembl\u00e9es au sein de <a href=\"https:\/\/alliance-maladies-rares.org\/qui-sommes-nous\/notre-adn\/\">l\u2019Alliance maladies rares<\/a>.<\/p>\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_custom_heading text=&#8221;Structures d\u00e9di\u00e9es \u00e0 la prise en charge des maladies rares au plan national&#8221; font_container=&#8221;tag:h2|text_align:center&#8221; use_theme_fonts=&#8221;yes&#8221;][vc_column_text]\n<p><strong>Les <\/strong><a href=\"https:\/\/sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/article\/l-offre-de-soins#:~:text=Rattach%C3%A9e%20%C3%A0%20un%20%C3%A9tablissement%20de%20sant%C3%A9%20et%20plac%C3%A9e,m%C3%A9dico-sociales%2C%20des%20universit%C3%A9s%2C%20des%20associations%20de%20personnes%20\"><strong>1 757<\/strong><\/a><strong> centres de comp\u00e9tence maladies rares (CCMR)<\/strong> assurent la prise en charge et le suivi des personnes atteintes de maladies rares au plus proche de leur domicile, sur la base d\u2019un maillage territorial adapt\u00e9 et en lien avec le CRMR dont ils d\u00e9pendent fonctionnellement. Ils assurent \u00e9galement l\u2019activit\u00e9 de t\u00e9l\u00e9m\u00e9decine pour les personnes de leur domaine g\u00e9ographique.<\/p>\n[\/vc_column_text][vc_column_text]\n<p><strong>Les <\/strong><a href=\"https:\/\/sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/article\/l-offre-de-soins#:~:text=Rattach%C3%A9e%20%C3%A0%20un%20%C3%A9tablissement%20de%20sant%C3%A9%20et%20plac%C3%A9e,m%C3%A9dico-sociales%2C%20des%20universit%C3%A9s%2C%20des%20associations%20de%20personnes%20\"><strong>83<\/strong><\/a><strong> centres de ressources et de comp\u00e9tences (CRC)<\/strong> sont des CCMR r\u00e9pondant aux crit\u00e8res de s\u00e9lection que sont un minimum de 100 patients par an et au moins 150 venues comptabilis\u00e9es pour ces 100 patients.<\/p>\n[\/vc_column_text][vc_column_text]\n<p><strong>Les <\/strong><a href=\"https:\/\/sante.gouv.fr\/soins-et-maladies\/prises-en-charge-specialisees\/maladies-rares\/article\/l-offre-de-soins#:~:text=Rattach%C3%A9e%20%C3%A0%20un%20%C3%A9tablissement%20de%20sant%C3%A9%20et%20plac%C3%A9e,m%C3%A9dico-sociales%2C%20des%20universit%C3%A9s%2C%20des%20associations%20de%20personnes%20\"><strong>109<\/strong><\/a><strong> centres de r\u00e9f\u00e9rence (CRMR)<\/strong> rassemblent une \u00e9quipe hospitali\u00e8re hautement sp\u00e9cialis\u00e9e ayant une expertise av\u00e9r\u00e9e pour une maladie rare \u2013 ou un groupe de maladies rares \u2013 et qui d\u00e9veloppent leurs activit\u00e9s dans les domaines des soins, de l\u2019enseignement-formation et de la recherche. Cette \u00e9quipe est m\u00e9dicale mais int\u00e8gre \u00e9galement des comp\u00e9tences param\u00e9dicales, psychologiques, m\u00e9dico-sociales, \u00e9ducatives et sociales. Les centres de r\u00e9f\u00e9rence assurent tout \u00e0 la fois une prise en charge de proximit\u00e9 dans leur bassin de population et un rayonnement au niveau r\u00e9gional, national, europ\u00e9en voire international.<\/p>\n[\/vc_column_text][vc_column_text]\n<p><strong>Les CRMR sont int\u00e9gr\u00e9s \u00e0 <\/strong><a href=\"https:\/\/www.filieresmaladiesrares.fr\/\"><strong>une des 23 fili\u00e8res<\/strong><\/a><strong> de sant\u00e9 maladies rares (FSMR)<\/strong>, rattach\u00e9e \u00e0 un \u00e9tablissement de sant\u00e9 et plac\u00e9e sous la responsabilit\u00e9 d\u2019un coordonnateur m\u00e9dical. Une FSMR est une organisation qui coordonne un ensemble associant des centres de r\u00e9f\u00e9rence maladies rares, des centres de comp\u00e9tence, des centres de ressources, des professionnels de sant\u00e9, des laboratoires de diagnostic et de recherche, des structures \u00e9ducatives, sociales et m\u00e9dico-sociales, des universit\u00e9s, des associations de personnes malades et tout autre partenaire \u2013 y compris priv\u00e9 \u2013 apportant une valeur ajout\u00e9e \u00e0 l\u2019action collective.<\/p>\n[\/vc_column_text][vc_row_inner][vc_column_inner css=&#8221;.vc_custom_1744296404596{margin: 20px !important;padding: 20px !important;background-color: #ECF2F4 !important;}&#8221;][vc_column_text css=&#8221;.vc_custom_1744296514069{background-color: #ecf2f4 !important;}&#8221;]\n<p style=\"text-align: left;\">Le <a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/pnmr_3_v25-09pdf.pdf\"><strong>plan national maladies rares 2018-2022 (PNMR3)<\/strong> port\u00e9 par le minist\u00e8re des Solidarit\u00e9s et de la Sant\u00e9 et le minist\u00e8re de l\u2019Enseignement sup\u00e9rieur de la Recherche et de l\u2019Innovation<\/a> d\u00e9cline 55 mesures, regroup\u00e9es en 11 axes au service de 5 ambitions\u00a0:<\/p>\n<ul>\n<li style=\"text-align: left;\">Permettre un diagnostic rapide pour chacun, afin de r\u00e9duire l\u2019errance et l\u2019impasse diagnostiques<\/li>\n<li style=\"text-align: left;\">Innover pour traiter, pour que la recherche permette l\u2019accroissement des moyens th\u00e9rapeutiques<\/li>\n<li style=\"text-align: left;\">Am\u00e9liorer la qualit\u00e9 de vie et l\u2019autonomie des personnes malades<\/li>\n<li style=\"text-align: left;\">Communiquer et former, en favorisant le partage de la connaissance et des savoir-faire sur les maladies rares<\/li>\n<li style=\"text-align: left;\">Moderniser les organisations et optimiser les financements nationaux<\/li>\n<\/ul>\n[\/vc_column_text][vc_column_text css=&#8221;&#8221;]\n<p><strong>Le <a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/pnmr4.pdf\">4e plan national maladies rares 2025-2030 (PNMR4) &#8220;<em>Des territoires vers l&#8217;Europe&#8221;<\/em><\/a><\/strong> a \u00e9t\u00e9 officiellement lanc\u00e9 le 25 f\u00e9vrier 2025, juste avant la journ\u00e9e internationale des maladies rares.<\/p>\n<p>Ce nouveau plan ambitieux est structur\u00e9 autour de quatre axes principaux visant \u00e0 am\u00e9liorer significativement la prise en charge des patients :<\/p>\n<ul>\n<li>Renforcement du parcours du patient ;<\/li>\n<li>Acc\u00e9l\u00e9ration du diagnostic ;<\/li>\n<li>Promotion de l\u2019acc\u00e8s aux traitements ;<\/li>\n<li>D\u00e9veloppement des bases de donn\u00e9es et des biobanques.<\/li>\n<\/ul>\n[\/vc_column_text][vc_btn title=&#8221;En savoir plus&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;left&#8221; css=&#8221;&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fwp-content%2Fuploads%2F2025%2F10%2FAPMnews-Maladies-rares_-le-soutien-a-la-recherche-present-dans-tous-les-axes-du-nouveau-plan.pdf|target:_blank&#8221;][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row]\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row][vc_column width=&#8221;1\/3&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-info-circle&#8221; color=&#8221;custom&#8221; align=&#8221;center&#8221;\u2026","protected":false},"author":12,"featured_media":0,"parent":3673198,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-3674404","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Informations g\u00e9n\u00e9rales sur les maladies rares - Site du CHU de Poitiers<\/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.chu-poitiers.fr\/maladies-rares-accueil\/informations-generales-sur-les-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Informations g\u00e9n\u00e9rales sur les maladies rares - Site du CHU de Poitiers\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column width=&#8221;1\/3&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-info-circle&#8221; color=&#8221;custom&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679322479786{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; custom_color=&#8221;#23b093&#8243;][vc_column_text] Une maladie rare est une maladie qui atteint moins d\u2019une personne sur 2 000 en population g\u00e9n\u00e9rale. [\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-pie-chart&#8221; color=&#8221;custom&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679322575768{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; custom_color=&#8221;#e71d73&#8243;][vc_column_text] En France, 3 millions de personnes sont atteintes par l\u2019une [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.chu-poitiers.fr\/maladies-rares-accueil\/informations-generales-sur-les-maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"Site du CHU de Poitiers\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-09T14:41:34+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/maladies-rares-accueil\\\/informations-generales-sur-les-maladies-rares\\\/\",\"url\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/maladies-rares-accueil\\\/informations-generales-sur-les-maladies-rares\\\/\",\"name\":\"Informations g\u00e9n\u00e9rales sur les maladies rares - Site du CHU de Poitiers\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/#website\"},\"datePublished\":\"2023-03-21T13:50:31+00:00\",\"dateModified\":\"2026-03-09T14:41:34+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/maladies-rares-accueil\\\/informations-generales-sur-les-maladies-rares\\\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/www.chu-poitiers.fr\\\/maladies-rares-accueil\\\/informations-generales-sur-les-maladies-rares\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/maladies-rares-accueil\\\/informations-generales-sur-les-maladies-rares\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Maladies rares &#8211; Accueil\",\"item\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/maladies-rares-accueil\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Informations g\u00e9n\u00e9rales sur les maladies rares\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/#website\",\"url\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/\",\"name\":\"Site du CHU de Poitiers\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/#organization\",\"name\":\"CHU de Poitiers\",\"url\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-Horizontal-CHU-Poitiers_Couleurs.png\",\"contentUrl\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-Horizontal-CHU-Poitiers_Couleurs.png\",\"width\":2245,\"height\":1064,\"caption\":\"CHU de Poitiers\"},\"image\":{\"@id\":\"https:\\\/\\\/www.chu-poitiers.fr\\\/#\\\/schema\\\/logo\\\/image\\\/\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Informations g\u00e9n\u00e9rales sur les maladies rares - Site du CHU de Poitiers","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:\/\/www.chu-poitiers.fr\/maladies-rares-accueil\/informations-generales-sur-les-maladies-rares\/","og_locale":"en_US","og_type":"article","og_title":"Informations g\u00e9n\u00e9rales sur les maladies rares - Site du CHU de Poitiers","og_description":"[vc_row][vc_column width=&#8221;1\/3&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-info-circle&#8221; color=&#8221;custom&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679322479786{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; custom_color=&#8221;#23b093&#8243;][vc_column_text] Une maladie rare est une maladie qui atteint moins d\u2019une personne sur 2 000 en population g\u00e9n\u00e9rale. 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