{"id":2285242,"date":"2023-02-15T16:14:18","date_gmt":"2023-02-15T15:14:18","guid":{"rendered":"https:\/\/www.chu-poitiers.fr\/pole-regional-cancerologie-2026-copy\/"},"modified":"2026-10-06T15:20:20","modified_gmt":"2026-10-06T13:20:20","slug":"maladies-rares","status":"publish","type":"page","link":"https:\/\/www.chu-poitiers.fr\/en\/maladies-rares-accueil\/maladies-rares\/","title":{"rendered":"Maladies rares"},"content":{"rendered":"<div class=\"wpb-content-wrapper\">[vc_row][vc_column][vc_column_text]\n<p style=\"text-align: center;\">La prise en charge des maladies rares au CHU de Poitiers est assur\u00e9e par les structures suivantes\u00a0:<\/p>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text css=&#8221;.vc_custom_1679406881763{margin-bottom: 0px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;]\n<p style=\"text-align: center;\">Un <span style=\"color: #ea5b0c;\"><strong>centre de r\u00e9f\u00e9rence<\/strong><\/span> maladies rares (CRMR) d\u00e9di\u00e9 \u00e0<b> l\u2019amylose AL et autres maladies par d\u00e9p\u00f4t d\u2019immunoglobulines monoclonales<\/b> int\u00e9gr\u00e9 \u00e0 la fili\u00e8re de sant\u00e9 maladies rares MARIH<\/p>\n[\/vc_column_text][vc_btn title=&#8221;En savoir plus&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1690204622705{margin-top: 5px !important;margin-bottom: 20px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fnephrologie-hemodialyse-transplantation-renale%2Fcentre-de-reference-amylose-al-et-autres-maladies-par-depot-dimmunoglobulines-monoclonales%2F|target:_blank&#8221; el_id=&#8221;#nephrologie&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text css=&#8221;.vc_custom_1679406894607{margin-bottom: 0px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;]\n<p style=\"text-align: center;\">Un <span style=\"color: #23b093;\"><strong>centre de ressources et de comp\u00e9tence<\/strong><\/span> (CRC) <strong>maladies h\u00e9morragiques constitutionnelles<\/strong> rattach\u00e9 \u00e0 la fili\u00e8re de sant\u00e9 maladies rares MHEMO<\/p>\n[\/vc_column_text][vc_btn title=&#8221;En savoir plus&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1690204573411{margin-top: 5px !important;margin-bottom: 20px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fmedecine-interne-maladies-infectieuses-tropicales%2Fcentre-ressources-competence-maladies-hemorragiques-constitutionnelles%2F&#8221;][\/vc_column_inner][\/vc_row_inner][vc_row_inner css=&#8221;.vc_custom_1679407105955{margin-top: 20px !important;}&#8221;][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text css=&#8221;.vc_custom_1679406937839{margin-bottom: 0px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;]\n<p style=\"text-align: center;\">Un <span style=\"color: #23b093;\"><strong>centre de ressources et de comp\u00e9tence<\/strong><\/span> associ\u00e9 (CRC) d\u00e9di\u00e9 \u00e0 la <strong>scl\u00e9rose en plaques<\/strong>, rattach\u00e9 \u00e0 la fili\u00e8re de sant\u00e9 maladies rares FILSAN<\/p>\n[\/vc_column_text][vc_btn title=&#8221;En savoir plus&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1690204613995{margin-top: 5px !important;margin-bottom: 20px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fneurologie%2Fcentre-ressources-competences-sclerose-en-plaques%2F|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text css=&#8221;.vc_custom_1707734157752{margin-bottom: 0px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;]\n<p style=\"text-align: center;\"><b>44 <\/b><span style=\"color: #e71d73;\"><strong>centres de comp\u00e9tences<\/strong><\/span><b> maladies rares <\/b><\/p>\n[\/vc_column_text][vc_btn title=&#8221;En savoir plus&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679564817582{margin-top: 5px !important;margin-bottom: 20px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;url:%23centres|||&#8221;][\/vc_column_inner][\/vc_row_inner][vc_separator border_width=&#8221;2&#8243; el_width=&#8221;70&#8243;][vc_custom_heading text=&#8221;\u00c9quipe r\u00e9f\u00e9rente des maladies rares au CHU de Poitiers&#8221; font_container=&#8221;tag:h2|text_align:center&#8221; use_theme_fonts=&#8221;yes&#8221; css=&#8221;.vc_custom_1679322236473{margin-bottom: 20px !important;}&#8221; el_id=&#8221;sommaire&#8221;][vc_column_text css=&#8221;&#8221;]\n<ul>\n<li>V\u00e9ronique FERRAND-RIGALLAUD , coordinatrice administrative<\/li>\n<li>Pr Mathieu PUYADE, m\u00e9decin r\u00e9f\u00e9rent maladies rares<\/li>\n<li>Morgiane MENAIA, coordinatrice maladies rares<\/li>\n<\/ul>\n[\/vc_column_text][vc_separator border_width=&#8221;2&#8243; el_width=&#8221;70&#8243;][vc_custom_heading text=&#8221;Programmes d&#8217;\u00e9ducation th\u00e9rapeutique (ETP) relatifs aux maladies rares&#8221; font_container=&#8221;tag:h2|text_align:center&#8221; use_theme_fonts=&#8221;yes&#8221; css=&#8221;.vc_custom_1679563618453{margin-bottom: 20px !important;}&#8221;][vc_column_text]\n<p style=\"text-align: center;\">Les patients sont orient\u00e9s vers le programme par leurs m\u00e9decins, sur <strong>prescription m\u00e9dicale<\/strong>, puis contactent la Vie la sant\u00e9, une maison innovante d\u00e9di\u00e9e \u00e0 la promotion de la sant\u00e9.<\/p>\n<p style=\"text-align: center;\">Les patients peuvent b\u00e9n\u00e9ficier d&#8217;ateliers d&#8217;autosoins en lien avec la maladie ainsi que des <a href=\"https:\/\/www.chu-poitiers.fr\/specialites\/vie-la-sante\/themes-de-sante\/\">ateliers cr\u00e9ateurs de sant\u00e9<\/a> permettant le travail des comp\u00e9tences d&#8217;adaptation. Ces ateliers sont r\u00e9alis\u00e9s \u00e0 la Vie la Sant\u00e9, sur le site de la Mil\u00e9trie du CHU de Poitiers.<\/p>\n<p style=\"text-align: center;\">Chaque programme ETP est d\u00e9clar\u00e9 aupr\u00e8s de l\u2019ARS.<\/p>\n<p style=\"text-align: center;\"><strong>Aucune contribution financi\u00e8re<\/strong> n&#8217;est demand\u00e9e aux b\u00e9n\u00e9ficiaires des programmes ETP.<\/p>\n[\/vc_column_text][vc_icon icon_fontawesome=&#8221;fa fa-phone&#8221; color=&#8221;black&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679563556365{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;][vc_column_text]\n<p style=\"text-align: center;\"><strong>05.49.44.48.18<\/strong><br \/>\n<a href=\"mailto:vielasante@chu-poitiers.fr\">vielasante@chu-poitiers.fr<\/a><\/p>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Plus d&#8217;infos sur les parcours ETP&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fvie-la-sante%2Fnos-programmes%2F%231678199808762-dc2b322c-5b6c||target:%20_blank|&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Plus d&#8217;infos sur les ateliers cr\u00e9ateurs de sant\u00e9&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fvie-la-sante%2Fnos-programmes%2F%231678199808737-0199cb23-88de||target:%20_blank|&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Site web de la Vie la Sant\u00e9&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fvie-la-sante%2F||target:%20_blank|&#8221;][\/vc_column_inner][\/vc_row_inner][vc_column_text]\n<p style=\"color: #23b093;\"><strong>Amylose : programme ORIGAMY<\/strong><\/p>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;3\/4&#8243;][vc_column_text]\n<p>Parcours propos\u00e9 <strong>aux patients et leurs aidants<\/strong>, porteurs d&#8217;amylose AL et autres maladies de d\u00e9p\u00f4ts\u00a0d&#8217;immunoglobulines monoclonales pouvant \u00eatre atteints d&#8217;une insuffisance r\u00e9nale chronique, cardiaque ou neuropathie p\u00e9riph\u00e9rique.<\/p>\n<p>Favorise <strong>l&#8217;autonomie<\/strong> avec une meilleure connaissance des traitements et la gestion au quotidien de la maladie.<\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-check-square-o&#8221; color=&#8221;black&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679564172401{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;][vc_column_text]\n<p style=\"text-align: center;\">Programme d\u00e9clar\u00e9 aupr\u00e8s de l\u2019Agence r\u00e9gionale de sant\u00e9 (ARS) en ao\u00fbt 2021<\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_column_text]\n<p>L&#8217;\u00e9quipe dispensant ce programme est constitu\u00e9e d&#8217;un m\u00e9decin coordonnateur, le Dr Estelle Desport, et de deux infirmi\u00e8res r\u00e9f\u00e9rentes form\u00e9es \u00e0 l&#8217;ETP, exer\u00e7ant au sein du service de n\u00e9phrologie, Val\u00e9rie Templereau et Coralie Gaboriau.<\/p>\n<p>L\u2019\u00e9quipe est en lien avec l\u2019association fran\u00e7aise contre l\u2019amylose\u00a0et un\u00a0patient partenaire.<\/p>\n[\/vc_column_text][vc_column_text]\n<p style=\"color: #23b093;\"><strong>Maladies chroniques du sang (adultes)<br \/>\n<\/strong><\/p>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;3\/4&#8243;][vc_column_text]\n<p>Parcours propos\u00e9 <strong>aux patients et leur entourage,<\/strong> porteurs de maladies rares du sang telles que la dr\u00e9panocytose, le d\u00e9ficit immunitaire primitif ou les maladies h\u00e9morragiques, par une \u00e9quipe professionnelle form\u00e9e en lien avec des associations et patient partenaire.<\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-check-square-o&#8221; color=&#8221;black&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679564172401{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;][vc_column_text]\n<p style=\"text-align: center;\">Programme d\u00e9clar\u00e9 aupr\u00e8s de l\u2019ARS en juillet 2020<\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_column_text]\n<p>L\u2019\u00e9quipe dispensant ce programme d\u2019\u00e9ducation th\u00e9rapeutique (ETP) est constitu\u00e9e de deux m\u00e9decins coordonnateurs, le Dr Alain Ramassamy et le Dr Justine Dautremer, et d\u2019une infirmi\u00e8re r\u00e9f\u00e9rente, Ludivine Henoux.<\/p>\n[\/vc_column_text][vc_column_text]\n<p style=\"color: #23b093;\"><strong>Maladies chroniques du sang (enfants)<br \/>\n<\/strong><\/p>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;3\/4&#8243;][vc_column_text]\n<p>Parcours propos\u00e9 <strong>aux enfants et leur famille<\/strong>, atteints de maladies rares du sang : dr\u00e9panocytose, h\u00e9mophilie, h\u00e9molyses chroniques, d\u00e9ficit immunitaire.<\/p>\n<p>Le parcours cible l&#8217;acquisition de <strong>comp\u00e9tences d&#8217;autosoins et d&#8217;adaptation<\/strong> pour accroitre leur autonomie, anticiper et \u00e9viter les complications li\u00e9es aux situations aigu\u00ebs et permettre l&#8217;adaptation des conduites aux situations afin de <strong>maintenir ou am\u00e9liorer leur qualit\u00e9 de vie<\/strong>.<\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-check-square-o&#8221; color=&#8221;black&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679564172401{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;][vc_column_text]\n<p style=\"text-align: center;\">Programme d\u00e9clar\u00e9 aupr\u00e8s de l\u2019ARS en ao\u00fbt 2017<\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_column_text]\n<p>L\u2019\u00e9quipe dispensant ce programme d\u2019\u00e9ducation th\u00e9rapeutique (ETP) est constitu\u00e9e d\u2019un m\u00e9decin coordonnateur, le Dr Laurence Blanc, et d\u2019une infirmi\u00e8re r\u00e9f\u00e9rente, Ludivine Henoux.<\/p>\n<p>L\u2019\u00e9quipe est en lien avec des associations nationales et en partenariat avec \u00ab l\u2019Ecole de l\u2019ADN \u00bb, association de m\u00e9diation scientifique de l\u2019Espace Mend\u00e8s France \u00e0 Poitiers, partenariat soutenu par la r\u00e9gion Nouvelle-Aquitaine.<\/p>\n[\/vc_column_text][vc_column_text css=&#8221;&#8221;]\n<p style=\"color: #23b093;\"><strong>Insuffisance surr\u00e9nalienne : programme SUR2MOI<br \/>\n<\/strong><\/p>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;3\/4&#8243;][vc_column_text css=&#8221;&#8221;]\n<p>Parcours propos\u00e9 aux personnes adultes et leur entourage, porteurs d\u2019une insuffisance surr\u00e9nalienne chronique. L\u2018\u00e9quipe ETP accompagne les patients \u00e0 am\u00e9liorer leur qualit\u00e9 de vie avec la maladie, en d\u00e9veloppant leurs connaissances, leur autonomie\u00a0et \u00e0 pr\u00e9venir les risques d\u2019insuffisance surr\u00e9nale aigue.<\/p>\n<p>L\u2019\u00e9quipe dispensant ce programme d\u2019\u00e9ducation th\u00e9rapeutique (ETP) est constitu\u00e9 d\u2019un m\u00e9decin, le Dr Aur\u00e9lie Miot, d\u2019une infirmi\u00e8re r\u00e9f\u00e9rente, Sophie Faure et d\u2019une patiente partenaire.<\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_icon icon_fontawesome=&#8221;fa fa-check-square-o&#8221; color=&#8221;black&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1679564172401{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\">Programme d\u00e9clar\u00e9 aupr\u00e8s de l\u2019ARS en juillet 2025<\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_separator border_width=&#8221;2&#8243; el_width=&#8221;70&#8243;][vc_custom_heading text=&#8221;Nos centres de r\u00e9f\u00e9rences et de comp\u00e9tences des maladies rares&#8221; font_container=&#8221;tag:h2|text_align:center&#8221; use_theme_fonts=&#8221;yes&#8221; css=&#8221;.vc_custom_1690187268650{margin-bottom: 20px !important;}&#8221; el_id=&#8221;centres&#8221;][vc_column_text css=&#8221;.vc_custom_1752757657789{margin-bottom: 10px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;]\n<p style=\"text-align: center;\"><span style=\"color: #a3195b;\"><strong>18 fili\u00e8res maladies rares<\/strong><\/span> sont repr\u00e9sent\u00e9es au CHU de Poitiers.<\/p>\n[\/vc_column_text][vc_btn title=&#8221;Rapport d&#8217;activit\u00e9&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; i_icon_fontawesome=&#8221;fa fa-solid fa-chart-pie&#8221; css=&#8221;.vc_custom_1753083864994{margin-top: 0px !important;border-top-width: 0px !important;padding-top: 0px !important;}&#8221; add_icon=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fwp-content%2Fuploads%2F2025%2F07%2FRapport-Activites-BAMARA-2024-par-FSMR-1.pdf|target:_blank&#8221;][vc_row_inner content_placement=&#8221;middle&#8221; css=&#8221;.vc_custom_1676544543747{padding-top: 10px !important;padding-bottom: 10px !important;background-color: #f4f4f4 !important;}&#8221;][vc_column_inner width=&#8221;1\/6&#8243; css=&#8221;.vc_custom_1676544674130{margin-top: 0px !important;margin-right: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;}&#8221;][vc_single_image image=&#8221;2351305&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1676544588549{margin-top: 0px !important;margin-right: 0px !important;margin-bottom: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;padding-bottom: 0px !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;5\/6&#8243; css=&#8221;.vc_custom_1676544668170{margin-top: 0px !important;margin-bottom: 0px !important;margin-left: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;border-left-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;padding-left: 0px !important;}&#8221;][vc_column_text css=&#8221;.vc_custom_1676544597808{margin-top: 0px !important;margin-bottom: 0px !important;margin-left: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;border-left-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;padding-left: 0px !important;}&#8221;]\n<p style=\"color: #ea5b0c; text-transform: uppercase;\"><strong>Cardiologie<\/strong><\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Troubles du rythme cardiaque h\u00e9r\u00e9ditaires ou rares&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fchirurgie-cardio-thoracique%2Fcentre-de-competence-des-troubles-du-rythme-cardiaque-hereditaires-ou-rares-de-louest%2F|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][\/vc_column_inner][\/vc_row_inner][vc_row_inner content_placement=&#8221;middle&#8221; css=&#8221;.vc_custom_1676544543747{padding-top: 10px !important;padding-bottom: 10px !important;background-color: #f4f4f4 !important;}&#8221;][vc_column_inner width=&#8221;1\/6&#8243; css=&#8221;.vc_custom_1676544674130{margin-top: 0px !important;margin-right: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;}&#8221;][vc_single_image image=&#8221;2351428&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1676544906548{margin-top: 0px !important;margin-right: 0px !important;margin-bottom: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;padding-bottom: 0px !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;5\/6&#8243; css=&#8221;.vc_custom_1676544668170{margin-top: 0px !important;margin-bottom: 0px !important;margin-left: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;border-left-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;padding-left: 0px 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link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fendocrinologie-diabetologie-nutrition%2Fcentre-de-competence-du-developpement-genital-du-foetus-a-ladulte%2F|target:_blank&#8221;][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Maladies endocriniennes rares de la croissance et du d\u00e9veloppement&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fendocrinologie-diabetologie-nutrition%2Fccmr-maladies-endocriniennes-rares-croissance-developpement-merc|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Pathologies rares de l&#8217;insulino-s\u00e9cr\u00e9tion et de l&#8217;insulino-sensibilit\u00e9&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fendocrinologie-diabetologie-nutrition%2Fcentre-de-competence-des-pathologies-rares-de-linsulino-secretion-et-de-linsulino-sensibilite%2F|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][\/vc_column_inner][\/vc_row_inner][vc_row_inner content_placement=&#8221;middle&#8221; css=&#8221;.vc_custom_1676544543747{padding-top: 10px !important;padding-bottom: 10px !important;background-color: #f4f4f4 !important;}&#8221;][vc_column_inner width=&#8221;1\/6&#8243; css=&#8221;.vc_custom_1676544674130{margin-top: 0px !important;margin-right: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;}&#8221;][vc_single_image image=&#8221;2505043&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1676904542137{margin-top: 0px !important;margin-right: 0px !important;margin-bottom: 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css=&#8221;.vc_custom_1676544674130{margin-top: 0px !important;margin-right: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;}&#8221;][vc_single_image image=&#8221;2359939&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1676560581736{margin-top: 0px !important;margin-right: 0px !important;margin-bottom: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;padding-bottom: 0px !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;5\/6&#8243; css=&#8221;.vc_custom_1676544668170{margin-top: 0px !important;margin-bottom: 0px !important;margin-left: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;border-left-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;padding-left: 0px 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link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fneurologie%2Fcentre-ressources-competences-sclerose-en-plaques%20%20|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Atrophie multi-syst\u00e9matis\u00e9e&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fneurologie%2Fcentre-de-reference-atrophie-multisystematisee%2F%20|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Maladie de Huntington&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fneurologie%2Fcentre-de-competence-de-la-maladie-de-huntington%20|target:_blank&#8221;][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner 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button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fneurologie%2Fcentre-de-competence-des-demences-rares-ou-precoces%2F|target:_blank&#8221;][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;St\u00e9r\u00e9otypies motrices rares&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fneurologie%2Fstereotypies-motrices-rares%2F|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Neurog\u00e9n\u00e9tique et maladies g\u00e9n\u00e9tiques rares du syst\u00e8me nerveux&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; 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link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fchirurgie-pediatrique%2Fcentre-de-competence-du-syndrome-de-pierre-robin-et-troubles-de-succion-deglutition-congenitaux%2F||target:%20_blank|&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Hernie de coupole diaphragmatique&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fchirurgie-pediatrique%2Fcentre-de-competence-de-la-hernie-de-coupole-diaphragmatique||target:%20_blank|&#8221;][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Maladies respiratoires rares&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fchirurgie-pediatrique%2Fcentre-de-competence-des-maladies-respiratoires-rares-respirare||target:%20_blank|&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;D\u00e9ficits immunitaires h\u00e9r\u00e9ditaires&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fpediatrie%2Fcentre-de-competence-deficits-immunitaires-hereditaires-ceredih%2F|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Cytop\u00e9nies autoimmunes de l&#8217;enfant&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fpediatrie%2Fcentre-de-competence-des-cytopenies-autoimmunes-de-lenfant-cerevance%20||target:%20_blank|&#8221;][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Affections chroniques et malformatives de l&#8217;oesophage&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fchirurgie-pediatrique%2Fcentre-de-competence-des-affections-chroniques-et-malformatives-de-loesophage-cracmo%20||target:%20_blank|&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;D\u00e9veloppement g\u00e9nital : du foetus \u00e0 l&#8217;adulte&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Fchirurgie-pediatrique%2Fcentre-competence-du-developpement-genital-du-foetus-a-ladulte||target:%20_blank|&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][\/vc_column_inner][\/vc_row_inner][vc_row_inner content_placement=&#8221;middle&#8221; css=&#8221;.vc_custom_1676544543747{padding-top: 10px !important;padding-bottom: 10px !important;background-color: #f4f4f4 !important;}&#8221;][vc_column_inner width=&#8221;1\/6&#8243; css=&#8221;.vc_custom_1676544674130{margin-top: 0px !important;margin-right: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;}&#8221;][vc_single_image image=&#8221;2503432&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1676902607838{margin-top: 0px !important;margin-right: 0px !important;margin-bottom: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-right: 0px !important;padding-bottom: 0px !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;5\/6&#8243; css=&#8221;.vc_custom_1676544668170{margin-top: 0px !important;margin-bottom: 0px !important;margin-left: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;border-left-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;padding-left: 0px !important;}&#8221;][vc_column_text css=&#8221;.vc_custom_1676902578658{margin-top: 0px !important;margin-bottom: 0px !important;margin-left: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;border-left-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;padding-left: 0px !important;}&#8221;]\n<p style=\"color: #ea5b0c; text-transform: uppercase;\"><strong>Rhumatologie<br \/>\n<\/strong><\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Maladies osseuses constitutionnelles&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Frhumatologie%2Fcentre-de-competence-des-maladies-osseuses-constitutionnelles%2F|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Rhumatismes inflammatoires et maladies auto-immunes syst\u00e9miques rares de l&#8217;enfant&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Frhumatologie%2Fcentre-de-competence-des-rhumatismes-inflammatoires-et-maladies-auto-immunes-systemiques-rares-de-lenfant-raise%2F||target:%20_blank|&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/3&#8243;][vc_btn title=&#8221;Dysplasies fibreuses des os et syndrome de McCune-Albright&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.chu-poitiers.fr%2Fspecialites%2Frhumatologie%2Fcentre-de-competence-dysplasies-fibreuses-syndrome-mccune-albright%2F|target:_blank&#8221;][\/vc_column_inner][\/vc_row_inner][vc_separator border_width=&#8221;2&#8243; el_width=&#8221;70&#8243;][vc_custom_heading text=&#8221;Centres maladies rares non repr\u00e9sent\u00e9s au CHU de Poitiers : vous orienter&#8221; font_container=&#8221;tag:h2|text_align:center&#8221; use_theme_fonts=&#8221;yes&#8221; css=&#8221;.vc_custom_1753083581494{margin-bottom: 20px !important;}&#8221; el_id=&#8221;mr-hors-chu&#8221;][vc_row_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_btn title=&#8221;Annuaire des centres&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.filieresmaladiesrares.fr%2Fannuaires-des-centres%2F|target:_blank&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_btn title=&#8221;Cancers rares&#8221; style=&#8221;flat&#8221; shape=&#8221;square&#8221; align=&#8221;center&#8221; css=&#8221;&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Fwww.maladiesraresinfo.org%2Finformer%2Finformation-generale-sur-les-maladies-rares%2Fles-cancers-rares.html|target:_blank&#8221;][\/vc_column_inner][\/vc_row_inner][vc_separator border_width=&#8221;2&#8243; el_width=&#8221;70&#8243;][vc_custom_heading text=&#8221;Nos partenaires&#8221; font_container=&#8221;tag:h2|text_align:center&#8221; use_theme_fonts=&#8221;yes&#8221; css=&#8221;.vc_custom_1752836980745{margin-bottom: 20px !important;}&#8221; el_id=&#8221;partenaires&#8221;][vc_column_text css=&#8221;&#8221;]\n<p>Les centres hospitaliers de Limoges et de Poitiers ont lanc\u00e9 la Plateforme d&#8217;Expertise Maladies Rares en Nouvelle-Aquitaine Nord (PEMR NAN) apr\u00e8s avoir r\u00e9pondu conjointement \u00e0 un appel \u00e0 projets de la direction g\u00e9n\u00e9rale de l&#8217;offre de soins (DGOS).<\/p>\n<p>C\u2019est une plateforme bi-site qui f\u00e9d\u00e8re les centres de r\u00e9f\u00e9rence et les centres de comp\u00e9tences maladies rares des CHU de Poitiers et Limoges, pour conduire des actions communes visant \u00e0 l\u2019am\u00e9lioration du diagnostic et de la prise en charge des maladies rares.<\/p>\n<p>La plateforme \u0153uvre en \u00e9troite collaboration avec de nombreux partenaires associatifs :<\/p>\n[\/vc_column_text][vc_row_inner content_placement=&#8221;middle&#8221; css=&#8221;.vc_custom_1756383353080{margin-bottom: 0px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72870826&#8243; img_size=&#8221;medium&#8221; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383521235{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/www.chu-limoges.fr\/ma-prise-en-charge\/nos-activites\/centres-de-reference-et-de-competences\/&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>CHU de Limoges<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72870841&#8243; img_size=&#8221;full&#8221; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383559957{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/www.arsla.org\/&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>Association pour la recherche sur la SLA-ARSLA<br \/>\n<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72870883&#8243; img_size=&#8221;full&#8221; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383575356{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/www.afh.asso.fr\/page\/3090093-accueil&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>Association fran\u00e7aise des h\u00e9mophiles<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72872530&#8243; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383486328{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/www.association-sclerodermie.fr\/&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>Association des scl\u00e9rodermiques France<br \/>\n<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner content_placement=&#8221;middle&#8221; css=&#8221;.vc_custom_1756383353080{margin-bottom: 0px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72873169&#8243; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383869744{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/lamargueriteasso.fr\/&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>Association La Marguerite<br \/>\n<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72873178&#8243; img_size=&#8221;full&#8221; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383677745{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/alliance-maladies-rares.org\/&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>Association Alliance maladies rares<br \/>\n<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72873193&#8243; img_size=&#8221;full&#8221; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383717451{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/www.maladiesraresinfo.org\/&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>Maladies rares infos services<br \/>\n<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/4&#8243;][vc_single_image image=&#8221;72873208&#8243; img_size=&#8221;full&#8221; alignment=&#8221;center&#8221; onclick=&#8221;custom_link&#8221; img_link_target=&#8221;_blank&#8221; css=&#8221;.vc_custom_1756383811438{margin-bottom: 5px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221; link=&#8221;https:\/\/nouvelleaquitaine.erhr.fr\/&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><em>\u00c9quipe relais handicaps rares en Nouvelle-Aquitaine<br \/>\n<\/em><\/p>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_separator border_width=&#8221;2&#8243; el_width=&#8221;70&#8243;][vc_custom_heading text=&#8221;M\u00e9dias&#8221; font_container=&#8221;tag:h2|text_align:center&#8221; use_theme_fonts=&#8221;yes&#8221; css=&#8221;.vc_custom_1752837000753{margin-bottom: 20px !important;}&#8221; el_id=&#8221;medias&#8221;][vc_column_text css=&#8221;&#8221;]\n<p style=\"text-align: center;\"><div class=\"mg-gallery\"><div class=\"mg-gallery-item\"><div class=\"image-container\"><a href=\"https:\/\/www.le7.info\/article\/25160-un-voile-leve-sur-les-maladies-rares\" target=\"_blank\"><img decoding=\"async\" width=\"300\" height=\"188\" src=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67d914022c37b-300x188.jpeg\" class=\"mg-image\" alt=\"maladies rares\" loading=\"lazy\" srcset=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67d914022c37b-300x188.jpeg 300w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67d914022c37b-1024x640.jpeg 1024w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67d914022c37b-768x480.jpeg 768w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67d914022c37b-130x81.jpeg 130w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67d914022c37b-550x344.jpeg 550w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67d914022c37b.jpeg 1460w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a><\/div><a href=\"https:\/\/www.le7.info\/article\/25160-un-voile-leve-sur-les-maladies-rares\" target=\"_blank\" class=\"mg-caption\">Un voile lev\u00e9 sur les maladies rares (Le 7)<\/a><\/div><div class=\"mg-gallery-item\"><div class=\"image-container\"><a href=\"https:\/\/www.le7.info\/article\/25047-poitiers-une-journee-pour-les-maladies-rares-au-chu\" target=\"_blank\"><img decoding=\"async\" width=\"300\" height=\"188\" src=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67c1a0731fd0b-300x188.jpeg\" class=\"mg-image\" alt=\"maladies rares\" loading=\"lazy\" srcset=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67c1a0731fd0b-300x188.jpeg 300w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67c1a0731fd0b-1024x640.jpeg 1024w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67c1a0731fd0b-768x480.jpeg 768w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67c1a0731fd0b-130x81.jpeg 130w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67c1a0731fd0b-550x344.jpeg 550w, https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/07\/67c1a0731fd0b.jpeg 1460w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a><\/div><a href=\"https:\/\/www.le7.info\/article\/25047-poitiers-une-journee-pour-les-maladies-rares-au-chu\" target=\"_blank\" class=\"mg-caption\">Poitiers - Une journ\u00e9e pour les maladies rares au CHU (Le 7)<\/a><\/div><div class=\"mg-gallery-item\"><div class=\"image-container\"><a href=\"https:\/\/www.chu-poitiers.fr\/la-belle-mobilisation-du-chu-de-poitiers-pour-la-journee-mondiale-des-maladies-rares\/\" target=\"_blank\"><img decoding=\"async\" width=\"300\" height=\"225\" src=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2025\/03\/maladies-rares-3.jpg\" class=\"mg-image\" alt=\"Journ\u00e9e maladies rares\" loading=\"lazy\" \/><\/a><\/div><a href=\"https:\/\/www.chu-poitiers.fr\/la-belle-mobilisation-du-chu-de-poitiers-pour-la-journee-mondiale-des-maladies-rares\/\" target=\"_blank\" class=\"mg-caption\">La belle mobilisation du CHU de Poitiers pour la journ\u00e9e mondiale des maladies rares<\/a><\/div><div class=\"mg-gallery-item\"><div class=\"image-container\"><a href=\"https:\/\/www.chu-poitiers.fr\/47-centres-maladies-rares-du-chu-labellises-en-2023\/\" target=\"_blank\"><img decoding=\"async\" width=\"300\" height=\"200\" src=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2024\/02\/visuel-maladies-rares.jpg\" class=\"mg-image\" alt=\"maladies rares\" loading=\"lazy\" \/><\/a><\/div><a href=\"https:\/\/www.chu-poitiers.fr\/47-centres-maladies-rares-du-chu-labellises-en-2023\/\" target=\"_blank\" class=\"mg-caption\">47 centres maladies rares du CHU labellis\u00e9s en 2023<\/a><\/div><\/div>\n[\/vc_column_text][\/vc_column][\/vc_row]\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row][vc_column][vc_column_text] La prise en charge des maladies rares au CHU de Poitiers est assur\u00e9e par les structures suivantes\u00a0: [\/vc_column_text][vc_row_inner][vc_column_inner\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-2285242","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>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\/maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Maladies rares - Site du CHU de Poitiers\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column][vc_column_text] La prise en charge des maladies rares au CHU de Poitiers est assur\u00e9e par les structures suivantes\u00a0: [\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text css=&#8221;.vc_custom_1679406881763{margin-bottom: 0px !important;border-bottom-width: 0px !important;padding-bottom: 0px !important;}&#8221;] Un centre de r\u00e9f\u00e9rence maladies rares (CRMR) d\u00e9di\u00e9 \u00e0 l\u2019amylose AL et autres maladies par d\u00e9p\u00f4t d\u2019immunoglobulines monoclonales int\u00e9gr\u00e9 \u00e0 la fili\u00e8re de sant\u00e9 maladies rares MARIH [\/vc_column_text][vc_btn [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.chu-poitiers.fr\/maladies-rares-accueil\/maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"Site du CHU de Poitiers\" \/>\n<meta property=\"article:modified_time\" content=\"2026-10-06T13:20:20+00:00\" \/>\n<meta name=\"twitter:card\" 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