{"id":91221,"date":"2025-02-25T16:55:00","date_gmt":"2025-02-25T14:55:00","guid":{"rendered":"https:\/\/www.ipsen.com\/?page_id=91221"},"modified":"2025-10-16T22:15:56","modified_gmt":"2025-10-16T20:15:56","slug":"maladies-rares","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/fr\/maladies-rares\/","title":{"rendered":"Maladies rares"},"content":{"rendered":"    <section class=\"sub-page-banner bg-img-enabled  banner-no-filter\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/Health-Rare-Disease.jpg)\">\n                <div class=\"container content-sec\">\n            <nav aria-label=\"breadcrumb\">\n            <ol class=\"breadcrumb\">\n                <li class=\"breadcrumb-item\"><a href=\"https:\/\/www.ipsen.com\/fr\/\">Accueil<\/a><\/li><li class=\"breadcrumb-item active\"><a href=\"#\" aria-current=\"page\">Comp\u00e9tence &#8211; Maladies rares<\/a><\/li><\/ol>\n            <\/nav>            <h1 class=\"visible banner-font-color-white\">Maladies rares<\/h1>\n            <p class=\"visible banner-font-color-white\">Les maladies rares touchent une personne sur dix. Dans le monde, ce sont 350 \u00e0 400 millions de personnes qui vivent avec l&#8217;une des 7 000 maladies rares identifi\u00e9es.<\/p>\n        <\/div>\n    <\/section>\n\n\n\n    <section class=\"title-text \">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-color:#EDEBE4;\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Qui Nous Sommes                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>Nous sommes Ipsen dans le domaine des maladies rares. Nous sommes des gens ordinaires avec l&#8217;ambition extraordinaire d&#8217;am\u00e9liorer la sant\u00e9 et de prolonger la vie des personnes atteintes de maladies rares.<\/p>\n<p>Chez Ipsen, nous nous consacrons au d\u00e9veloppement de traitements nouveaux et innovants pour les personnes atteintes de maladies rares. Nous utilisons notre expertise scientifique pour d\u00e9velopper des traitements qui peuvent changer la vie des personnes atteintes d&#8217;une maladie rare, parce que nous croyons qu&#8217;il faut \u00eatre l\u00e0 pour ceux qui sont souvent laiss\u00e9s pour compte.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"IPSEN-Gill-STANG--10Mbps\" src=\"https:\/\/player.vimeo.com\/video\/932793440?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner \">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row \">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" \n                                    src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/rare-1-1.jpg\" \n                                    alt=\"\" \n                                >\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                            <span class=\"dash\"><\/span>\n                                <h4 class=\"heading-para heading-four\" role=\"heading\" aria-level=\"2\">\n                                    Nous sommes Ipsen pour les maladies rares                                <\/h4>\n                                                    <\/div>\n                                                <p>Nous concentrons notre recherche et notre innovation sur les domaines o\u00f9 les besoins sont les plus importants et o\u00f9 nous pouvons avoir un impact significatif pour les patients. Notre priorit\u00e9 est de faire progresser les traitements et la compr\u00e9hension scientifique des maladies rares du foie, des maladies osseuses rares et des troubles endocriniens de la croissance.<\/p>\n                            <a \n                            aria-label=\" about Nous sommes Ipsen pour les maladies rares\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n<section class=\"media-tabs\">\n      <div class=\"container\">\n        <div class=\"media-tabs-inner\">\n          <ul class=\"media-list-ul\">\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link active\" href=\"https:\/\/www.ipsen.com\/fr\/science\/maladies-rares\/\">Maladies rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link \" href=\"https:\/\/www.ipsen.com\/fr\/maladies-rares\/maladie-hepatique-cholestatique-rare\/\">Maladies cholestatiques rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link \" href=\"https:\/\/www.ipsen.com\/fr\/maladies-rares\/maladies-osseuses-rares\/\">Maladies osseuses rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link \" href=\"https:\/\/www.ipsen.com\/fr\/maladies-rares\/troubles-endocriniens-de-la-croissance\/\">Troubles endocriniens de la croissance<\/a>\n                  <\/li>\n                      <\/ul>\n          <div id=\"navTabArrows\">\n              <div class=\"tab-nav-arrows\" id=\"tab-nav-prev\"><\/div>\n              <div class=\"tab-nav-arrows\" id=\"tab-nav-next\"><\/div>\n          <\/div>\n        <\/div>\n      <\/div>\n<\/section>\n\n<!-- Ipsen Content Overlay Start -->\n<section class=\"two-col-image-section\">\n    <div class=\"container two-img-section-innner\"  >\n        <div class=\"content-overlay-inner bg-color-enabled\" style=\"background-color:#EDEBE4\">\n                <!-- Ipsen Content Overlay Variation Two Start -->\n                <div class=\"row \">\n                    <div class=\"col-xs-12 col-sm-12 col-md-6 column-1 \">\n                        <div id=\"image-carousel\" class=\"img-video-section carousel\" data-bs-ride=\"carousel\">\n                            <div class=\"carousel-inner\">\n                                                                        <div class=\"carousel-item active\">\n                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/05-04_PATIENTS_Text-and-Photos-Overlapped_Nadine-FOP-img-05-HD_NADINE.jpg\" alt=\"Media Image\" >\n                                        <\/div>\n                                                            <\/div>\n                                                    <\/div>\n                    <\/div>\n                    <div class=\" col-xs-12 col-sm-12 col-md-6 column-2 \">\n                        <div class=\" section-content\">\n                                                                <div class=\"heading-dash\">\n                                        <span class=\"dash\"><\/span>\n                                        <h4 role=\"heading\" aria-level=\"2\" class=\"heading-para-right heading-four\">\n                                            L&#8217;engagement d&#8217;Ipsen envers les patients                                        <\/h4>\n                                    <\/div>\n                                                                                                                        <p class=\"section-para \">\n                                        Les personnes atteintes d&#8217;une maladie rare sont confront\u00e9es \u00e0 des obstacles quotidiens, notamment des retards de diagnostic et des traitements tardifs ou inad\u00e9quats. La nature chronique, progressive, d\u00e9g\u00e9n\u00e9rative et souvent mortelle de nombreuses maladies rares peut avoir un impact profond sur la qualit\u00e9 de vie. Nous nous engageons \u00e0 soutenir les patients depuis le diagnostic jusqu&#8217;au traitement et \u00e0 travailler en partenariat avec les communaut\u00e9s afin d&#8217;obtenir de meilleurs r\u00e9sultats pour tous.                                     <\/p>\n                                                                                                <a \n                                            role=\"link\" \n                                            class=\"btn-link section-btn cta-visible\" \n                                            href=\"https:\/\/www.ipsen.com\/fr\/patients\/ensemble-contre-les-maladies-rares\/\" \n                                            aria-label=\"En savoir plus sur le travail d'Ipsen avec les associations de patients\" \n                                            target=\"_self\"\n                                        >\n                                            En savoir plus                                        <\/a>    \n                                    <\/button>\n                                                    <\/div>\n                    <\/div>\n                    <!-- Ipsen Content Overlay Variation Two End -->\n                <\/div>\n        <!-- Ipsen Content Overlay Variation two End -->\n                <\/div>\n    <\/div>\n<\/section>\n<!-- Ipsen Content Overlay End -->\n\n<!-- Ipsen Content Overlay Start -->\n<section class=\"two-col-image-section\">\n    <div class=\"container two-img-section-innner\"  >\n        <div class=\"content-overlay-inner bg-color-enabled\" style=\"background-color:#EDEBE4\">\n                <!-- Ipsen Content Overlay Variation Two Start -->\n                <div class=\"row section-bg-reverse\">\n                    <div class=\"col-xs-12 col-sm-12 col-md-6 column-1 order-2\">\n                        <div id=\"image-carousel\" class=\"img-video-section carousel\" data-bs-ride=\"carousel\">\n                            <div class=\"carousel-inner\">\n                                                                        <div class=\"carousel-item active\">\n                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/Image16-1-1.jpg\" alt=\"Media Image\" >\n                                        <\/div>\n                                                            <\/div>\n                                                    <\/div>\n                    <\/div>\n                    <div class=\" col-xs-12 col-sm-12 col-md-6 column-2 order-1\">\n                        <div class=\" section-content\">\n                                                                <div class=\"heading-dash\">\n                                        <span class=\"dash\"><\/span>\n                                        <h4 role=\"heading\" aria-level=\"2\" class=\"heading-para-right heading-four\">\n                                            La science au centre de nos pr\u00e9occupations                                        <\/h4>\n                                    <\/div>\n                                                                                                                        <p class=\"section-para \">\n                                        L&#8217;un des plus grands d\u00e9fis dans le domaine des maladies rares est le peu de recherches et de connaissances scientifiques disponibles pour nous aider \u00e0 mieux comprendre ces maladies. \r\n\r\nNous lan\u00e7ons des programmes de d\u00e9veloppement clinique qui font progresser la compr\u00e9hension scientifique des maladies rares et de leur impact, afin d&#8217;ouvrir la voie \u00e0 une meilleure prise en charge de la maladie et \u00e0 de futures avanc\u00e9es th\u00e9rapeutiques.                                    <\/p>\n                                                                                                <a \n                                            role=\"link\" \n                                            class=\"btn-link section-btn cta-visible\" \n                                            href=\"https:\/\/www.ipsen.com\/fr\/essais-cliniques\/\" \n                                            aria-label=\"\" \n                                            target=\"_self\"\n                                        >\n                                            Essais cliniques                                        <\/a>    \n                                    <\/button>\n                                                    <\/div>\n                    <\/div>\n                    <!-- Ipsen Content Overlay Variation Two End -->\n                <\/div>\n        <!-- Ipsen Content Overlay Variation two End -->\n                <\/div>\n    <\/div>\n<\/section>\n<!-- Ipsen Content Overlay End -->\n\n    <section class=\"title-text \">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-color:#EDEBE4;\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Domaines D\u2019interet Pour Les Etudes Et Collaborations Sponsorisees De L\u2019exterieur                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p><b>Domaines<\/b> <b>d&#8217;int\u00e9r\u00eat<\/b> <b>en<\/b><b> lien avec <\/b><b>Elafibranor<\/b><\/p>\n<p>Cholangite Biliaire Primitive (CBP) 2L: Evolution des strat\u00e9gies de traitement<\/p>\n<ul>\n<li><b>Efficacit\u00e9 et s\u00e9curit\u00e9 \u00e0 long terme: <\/b>\n<ul>\n<li>Investigation des b\u00e9n\u00e9fices soutenus et des risques des traitements de 2\u00e8me ligne.<\/li>\n<\/ul>\n<\/li>\n<li><b>Efficacit\u00e9<\/b> <b>en<\/b><b> vie <\/b><b>r\u00e9elle<\/b><b>:<\/b>\n<ul>\n<li>R\u00e9alisation d&#8217;\u00e9tudes de cas pour \u00e9valuer les r\u00e9sultats pratiques.<\/li>\n<\/ul>\n<\/li>\n<li><b>Approches<\/b> <b>novatrices<\/b><b>:<\/b>\n<ul>\n<li>Intervention pr\u00e9coce : exploration de l&#8217;utilisation pr\u00e9coce pour pr\u00e9venir la progression de la maladie.<\/li>\n<li>Monoth\u00e9rapie : Investigation de l&#8217;utilisation en tant que traitement autonome.<\/li>\n<li>Th\u00e9rapies combin\u00e9es<\/li>\n<\/ul>\n<\/li>\n<li><b>Populations <\/b><b>sp\u00e9cifiques<\/b><b>:<\/b>\n<ul>\n<li>Groupes mal desservis : \u00e9tude des populations non incluses dans les essais cliniques standard.<\/li>\n<li>Patients \u00e0 haut risque : observation des patients pr\u00e9sentant une maladie avanc\u00e9e ou un risque de progression rapide de la maladie.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><b>Domaines<\/b> <b>d&#8217;int\u00e9r\u00eat<\/b> <b>en<\/b><b> lien avec <\/b><b>Odevixibat<\/b><\/p>\n<ul>\n<li><b>Prurit cholestatique associ\u00e9 aux maladies h\u00e9patiques p\u00e9diatriques : <\/b>\n<ul>\n<li>Dans le syndrome d&#8217;Alagille (ALGS) et la cholestase intrah\u00e9patique familiale progressive (PFIC), r\u00e9duction du prurit cholestatique et exploration des m\u00e9thodes permettant de quantifier le prurit en pratique clinique r\u00e9elle.<\/li>\n<\/ul>\n<\/li>\n<li><b>Taux d&#8217;acides biliaires s\u00e9riques et marqueurs de la sant\u00e9 h\u00e9patique :<\/b>\n<ul>\n<li>Examiner l&#8217;impact d\u2019un traitement par odevixibat sur la r\u00e9duction des acides biliaires, leur composition et leur relation avec la fonction h\u00e9patique et la progression de la maladie.<\/li>\n<\/ul>\n<\/li>\n<li><b>R\u00e9sultats \u00e0 long terme et progression de la maladie :<\/b>\n<ul>\n<li>S\u00e9rie d&#8217;\u00e9tudes de cas \u00e9valuant l&#8217;efficacit\u00e9 \u00e0 long terme du traitement par odevixibat, sans transplantation h\u00e9patique chez les patients p\u00e9diatriques atteints de PFIC ou d&#8217;ALGS.<\/li>\n<\/ul>\n<\/li>\n<li><b>Am\u00e9lioration de la qualit\u00e9 de vie rapport\u00e9e par les patients :<\/b>\n<ul>\n<li>Am\u00e9liorations de la qualit\u00e9 de vie, incluant la r\u00e9duction de l&#8217;utilisation de m\u00e9dicaments antiprurigineux, l&#8217;am\u00e9lioration du sommeil et l&#8217;am\u00e9lioration globale au quotidien.<\/li>\n<\/ul>\n<\/li>\n<li><b>Extension de l\u2019utilisation d&#8217;<\/b><b>odevixibat<\/b><b> \u00e0 d\u2019autres pathologies cholestatiques rares :<\/b>\n<ul>\n<li>Exploration des effets cliniques de l\u2019odevixibat, et de son impact sur la cholestase et sur la qualit\u00e9 de vie au-del\u00e0 des PFIC et du syndrome d\u2019Alagille.<\/li>\n<\/ul>\n<\/li>\n<li><b>Recherche fondamentale et \u00e9tudes pr\u00e9cliniques :<\/b>\n<ul>\n<li>Etiologie de la maladie et physiopathologie de PFIC, ALGS et AVB (atr\u00e9sie des voies biliaires).<\/li>\n<\/ul>\n<\/li>\n<li><b>Caract\u00e9risation g\u00e9n\u00e9tique :<\/b>\n<ul>\n<li>Mieux caract\u00e9riser les patients atteints de PFIC, ALGS et AVB en fonction des profils g\u00e9n\u00e9tiques et de la caract\u00e9risation du ph\u00e9notype\/g\u00e9notype.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n<!-- Ipsen Content Overlay Start -->\n<section class=\"two-col-image-section\">\n    <div class=\"container two-img-section-innner\"  >\n        <div class=\"content-overlay-inner bg-color-enabled\" style=\"background-color:#EDEBE4\">\n                <!-- Ipsen Content Overlay Variation Two Start -->\n                <div class=\"row \">\n                    <div class=\"col-xs-12 col-sm-12 col-md-6 column-1 \">\n                        <div id=\"image-carousel\" class=\"img-video-section carousel\" data-bs-ride=\"carousel\">\n                            <div class=\"carousel-inner\">\n                                                                        <div class=\"carousel-item active\">\n                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/Our-focus-on-innovation.png\" alt=\"Media Image\" >\n                                        <\/div>\n                                                            <\/div>\n                                                    <\/div>\n                    <\/div>\n                    <div class=\" col-xs-12 col-sm-12 col-md-6 column-2 \">\n                        <div class=\" section-content\">\n                                                                <div class=\"heading-dash\">\n                                        <span class=\"dash\"><\/span>\n                                        <h4 role=\"heading\" aria-level=\"2\" class=\"heading-para-right heading-four\">\n                                            L&#8217;accent mis sur l&#8217;innovation                                        <\/h4>\n                                    <\/div>\n                                                                                                                        <p class=\"section-para \">\n                                        Notre mission est de combler le foss\u00e9 entre la recherche scientifique innovante et l&#8217;am\u00e9lioration des r\u00e9sultats pour les patients.\r\n\r\nNous nous concentrons sur de nouvelles options th\u00e9rapeutiques qui r\u00e9pondent aux besoins des m\u00e9decins et des patients et nous investissons notre temps et nos ressources dans la recherche de m\u00e9dicaments qui agissent diff\u00e9remment, qui ont le potentiel de changer la vie en modifiant ou en ralentissant l&#8217;\u00e9volution d&#8217;une maladie et en soulageant la douleur et la souffrance li\u00e9es \u00e0 des sympt\u00f4mes d\u00e9bilitants.                                     <\/p>\n                                                                                                <a \n                                            role=\"link\" \n                                            class=\"btn-link section-btn cta-visible\" \n                                            href=\"https:\/\/www.ipsen.com\/fr\/portefeuille-de-produits-r-et-d\/\" \n                                            aria-label=\"\" \n                                            target=\"_self\"\n                                        >\n                                            Notre portefeuille de produits R&amp;D                                        <\/a>    \n                                    <\/button>\n                                                    <\/div>\n                    <\/div>\n                    <!-- Ipsen Content Overlay Variation Two End -->\n                <\/div>\n        <!-- Ipsen Content Overlay Variation two End -->\n                <\/div>\n    <\/div>\n<\/section>\n<!-- Ipsen Content Overlay End -->\n\n\n<!--Regular card with carousel -->\n<section class=\"p-slider  bg-color-disabled \"  >\n      <div class=\"slider-heading-container\">\n          <h3 role=\"heading\" aria-level=\"2\" class=\"slider-title visible heading-three\">Actualit\u00e9s sur les maladies rares <\/h3>\n          <p class=\"charcoal-grey hidden\"><\/p>\n      <\/div>\n              \n            <!-- glider insert -->\n            <div class=\"glider-contain multiple\">\n                                    <!-- buttons -->\n                    <div class=\"slider-btns\">\n                    <button aria-label=\"Pr\u00e9c\u00e9dent\" aria-hidden=\"true\" tabindex=\"-1\" aria-labelledby=\"glider-product-prev\" role=\"button\" title=\"Pr\u00e9c\u00e9dent\" class=\"glider-product-prev\">\n                      <span style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/blue-left-arrow.png);\"><\/span>\n                    <\/button>\n                    <button aria-label=\"Suivant\" aria-hidden=\"true\" tabindex=\"-1\" aria-labelledby=\"glider-product-next\" role=\"button\" title=\"Suivant\" class=\"glider-product-next\">\n                      <span style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/blue-right-arrow.png);\"><\/span>\n                    <\/button>\n                <\/div>\n                                    <div class=\"glider-product\">\n                                                  <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"\u00c9couter n\u2019est pas un slogan, c\u2019est le fondement de la prise en charge des maladies rares\">\n                              <a title=\"\u00c9couter n\u2019est pas un slogan, c\u2019est le fondement de la prise en charge des maladies rares\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/02\/Josep-Catlla-EVP-Corporate-Affairs-2026.jpg\" alt=\"\u00c9couter n\u2019est pas un slogan, c\u2019est le fondement de la prise en charge des maladies rares\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">27 F\u00e9vrier 2026<\/span>\n                                                                            <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">\u00c9couter n\u2019est pas un slogan, c\u2019est le fondement de la prise en charge des maladies rares<\/h4>\n                                          \n                                          <p>la Journ\u00e9e des maladies rares nous rappelle que ces pathologies touchent bien plus de personnes qu\u2019on ne l\u2019imagine : plus de 300 millions dans le monde, r\u00e9partis sur plus de 10 000 maladies rares identifi\u00e9es. Pourtant, ce qui me frappe le plus en cette journ\u00e9e de reconnaissance et de r\u00e9flexion, c\u2019est que l\u2019\u00e9coute des patients reste un levier encore sous\u2011exploit\u00e9 pour faire progresser les soins de sant\u00e9.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Journ\u00e9e des maladies rares 2026 : \u00c9couter les patients pour imaginer de meilleurs futurs\">\n                              <a title=\"Journ\u00e9e des maladies rares 2026 : \u00c9couter les patients pour imaginer de meilleurs futurs\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-des-maladies-rares-2026-ecouter-les-patients-pour-imaginer-de-meilleurs-futurs\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/02\/RDD_0a83d2.jpg\" alt=\"Journ\u00e9e des maladies rares 2026 : \u00c9couter les patients pour imaginer de meilleurs futurs\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">18 F\u00e9vrier 2026<\/span>\n                                                                            <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Journ\u00e9e des maladies rares 2026 : \u00c9couter les patients pour imaginer de meilleurs futurs<\/h4>\n                                          \n                                          <p>Les maladies rares sont plus r\u00e9pandues qu\u2019on ne le pense, tant par le nombre de vies qu\u2019elles touchent que par l\u2019impact profond qu\u2019elles ont sur le quotidien des patients et de leurs familles. Derri\u00e8re chaque diagnostic se trouve une personne qui affronte bien plus que des sympt\u00f4mes : une routine quotidienne boulevers\u00e9e, des projets de vie r\u00e9orient\u00e9s, l\u2019incompr\u00e9hension et l\u2019isolement \u00e0 surmonter, et des familles qui s\u2019adaptent \u00e0 l\u2019incertitude avec r\u00e9silience et espoir.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Journ\u00e9e Mondiale du Syndrome d&#8217;Alagille &#8211; L\u00e0 o\u00f9 des connexions puissantes peuvent faire la diff\u00e9rence\">\n                              <a title=\"Journ\u00e9e Mondiale du Syndrome d&#8217;Alagille &#8211; L\u00e0 o\u00f9 des connexions puissantes peuvent faire la diff\u00e9rence\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-mondiale-du-syndrome-dalagille-la-ou-des-connexions-puissantes-peuvent-faire-la-difference\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/01\/Image1-2.jpg\" alt=\"Journ\u00e9e Mondiale du Syndrome d&#8217;Alagille &#8211; L\u00e0 o\u00f9 des connexions puissantes peuvent faire la diff\u00e9rence\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">19 Janvier 2026<\/span>\n                                                                            <span class=\"time-stamp visible\">1 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Journ\u00e9e Mondiale du Syndrome d&#8217;Alagille &#8211; L\u00e0 o\u00f9 des connexions puissantes peuvent faire la diff\u00e9rence<\/h4>\n                                          \n                                          <p>Chez Ipsen, nous nous tenons aux c\u00f4t\u00e9s de l\u2019Alagille Syndrome Alliance le 24 janvier, Journ\u00e9e de sensibilisation \u00e0 l\u2019ALGS, et chaque jour. Nous comprenons l\u2019importance de soutenir les associations de patients dans leurs efforts pour sensibiliser \u00e0 ces maladies rares et complexes, afin que les familles sachent qu\u2019elles ne sont pas seules.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"This My PBC\">\n                              <a title=\"This My PBC\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/this-my-pbc\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/11\/TiMPBC-Logo-Blue-scaled-1.png\" alt=\"This My PBC\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">27 Novembre 2025<\/span>\n                                                                            <span class=\"time-stamp visible\">0 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">This My PBC<\/h4>\n                                          \n                                          <p>\u201cThis is My PBC\u201d\u00a0est une initiative de sensibilisation \u00e0 la maladie, d\u00e9velopp\u00e9e et financ\u00e9e par Ipsen, qui vise \u00e0 mieux faire conna\u00eetre la cholangite biliaire primitive (PBC) et \u00e0 encourager les personnes vivant avec cette maladie \u00e0 en apprendre davantage sur leur condition. Elle souligne que chaque exp\u00e9rience est diff\u00e9rente et l\u00e9gitime.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Rencontrez Jo, qui vit avec la CBP\">\n                              <a title=\"Rencontrez Jo, qui vit avec la CBP\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/rencontrez-jo-qui-vit-avec-la-cbp\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/11\/TiMPBC_Webiste-Images_700x420_Jo.jpg\" alt=\"Rencontrez Jo, qui vit avec la CBP\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">25 Novembre 2025<\/span>\n                                                                            <span class=\"time-stamp visible\">0 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Rencontrez Jo, qui vit avec la CBP<\/h4>\n                                          \n                                          <p>Le parcours de Jo a commenc\u00e9 il y a environ dix ans, lorsqu\u2019elle a consult\u00e9 son m\u00e9decin g\u00e9n\u00e9raliste en raison d\u2019une grande fatigue et d\u2019un \u00e9puisement g\u00e9n\u00e9ral. Ce n\u2019est qu\u2019il y a quatre ans, apr\u00e8s des analyses sanguines de routine et une biopsie du foie, qu\u2019elle a re\u00e7u son diagnostic. Les groupes de soutien, comme la PBC Foundation, ont \u00e9t\u00e9 une v\u00e9ritable r\u00e9v\u00e9lation pour Jo, lui offrant un accompagnement, des ressources \u00e9ducatives et une communaut\u00e9 partageant les m\u00eames exp\u00e9riences.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Rencontrez Wendy, qui vit avec la CBP\">\n                              <a title=\"Rencontrez Wendy, qui vit avec la CBP\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/rencontrez-wendy-qui-vit-avec-la-cbp\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/11\/TiMPBC_Webiste-Images_700x420_Wendy.jpg\" alt=\"Rencontrez Wendy, qui vit avec la CBP\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">25 Novembre 2025<\/span>\n                                                                            <span class=\"time-stamp visible\">0 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Rencontrez Wendy, qui vit avec la CBP<\/h4>\n                                          \n                                          <p>Il lui a fallu cinq ann\u00e9es de consultations chez son m\u00e9decin g\u00e9n\u00e9raliste et chez des sp\u00e9cialistes avant d\u2019obtenir un diagnostic. Son conseil aux personnes vivant avec la CBP: allez chez votre m\u00e9decin en \u00e9tant bien pr\u00e9par\u00e9(e), posez beaucoup de questions, g\u00e9rez votre maladie du mieux possible et soyez bienveillant(e) envers vous-m\u00eame.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Rencontrez Gill, qui vit avec la CBP\">\n                              <a title=\"Rencontrez Gill, qui vit avec la CBP\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/rencontrez-gill-qui-vit-avec-la-cbp\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/11\/TiMPBC_Webiste-Images_700x420_Gill.jpg\" alt=\"Rencontrez Gill, qui vit avec la CBP\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">25 Novembre 2025<\/span>\n                                                                            <span class=\"time-stamp visible\">0 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Rencontrez Gill, qui vit avec la CBP<\/h4>\n                                          \n                                          <p>Gill est une m\u00e8re et une grand-m\u00e8re d\u00e9vou\u00e9e, qui aime passer du temps avec ses petits-enfants et jardiner. Elle est \u00e9galement passionn\u00e9e par son travail de b\u00e9n\u00e9vole. Gill vit avec la CBP depuis plus de 20 ans.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Ipsen au Liver Meeting 2025\">\n                              <a title=\"Ipsen au Liver Meeting 2025\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ipsen-au-liver-meeting-2025\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/10\/AASLD-Thumbnail.jpg\" alt=\"Ipsen au Liver Meeting 2025\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">30 Octobre 2025<\/span>\n                                                                            <span class=\"time-stamp visible\">1 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Ipsen au Liver Meeting 2025<\/h4>\n                                          \n                                          <p>Nous sommes fiers de participer au Liver Meeting 2025 organis\u00e9 par l&#8217;American Association for the Study of Liver Disease (AASLD), o\u00f9 des professionnels de la sant\u00e9, des scientifiques et la communaut\u00e9 des patients se r\u00e9unissent pour discuter des derni\u00e8res avanc\u00e9es en mati\u00e8re d&#8217;innovations et de soins<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Le paysage en \u00e9volution des maladies du foie : innovation, int\u00e9gration et impact\">\n                              <a title=\"Le paysage en \u00e9volution des maladies du foie : innovation, int\u00e9gration et impact\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/general-fr\/le-paysage-en-evolution-des-maladies-du-foie-innovation-integration-et-impact\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/10\/IMG_6401-1.jpg\" alt=\"Le paysage en \u00e9volution des maladies du foie : innovation, int\u00e9gration et impact\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#153f99;\">\n                                            G\u00e9n\u00e9ral                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">30 Octobre 2025<\/span>\n                                                                            <span class=\"time-stamp visible\">6 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Le paysage en \u00e9volution des maladies du foie : innovation, int\u00e9gration et impact<\/h4>\n                                          \n                                          <p>Les maladies du foie sont devenues un domaine d\u2019int\u00e9r\u00eat majeur pour la communaut\u00e9 scientifique m\u00e9dicale, en raison de besoins non satisfaits importants \u2014 notamment dans les pathologies rares et peu prises en charge. <\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Journ\u00e9e de sensibilisation \u00e0 la CBP\u00a0: Confronter les pr\u00e9jug\u00e9s et faire entendre la voix des patients\">\n                              <a title=\"Journ\u00e9e de sensibilisation \u00e0 la CBP\u00a0: Confronter les pr\u00e9jug\u00e9s et faire entendre la voix des patients\"  href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/journee-de-sensibilisation-a-la-cbp-confronter-les-prejuges-et-faire-entendre-la-voix-des-patients\/\">\n                                                                    <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/09\/Ipsen.com-article-Picture.jpg\" alt=\"Journ\u00e9e de sensibilisation \u00e0 la CBP\u00a0: Confronter les pr\u00e9jug\u00e9s et faire entendre la voix des patients\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                                                    <div class=\"p-box-text\">\n                                                                                                                <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                                                                  <span class=\"time-stamp visible\">18 Septembre 2025<\/span>\n                                                                            <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                                                            <div class=\"text-div\">\n                                       \n                                           <h4 role=\"heading\" aria-level=\"3\" class=\"text-div-para\">Journ\u00e9e de sensibilisation \u00e0 la CBP\u00a0: Confronter les pr\u00e9jug\u00e9s et faire entendre la voix des patients<\/h4>\n                                          \n                                          <p>Pour les milliers de personnes, principalement des femmes, atteintes de cholangite biliaire primitive (CBP), une maladie h\u00e9patique auto-immune chronique et \u00e9volutive, le parcours peut \u00eatre solitaire.<\/p>\n                                                                              <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                        <\/div>\n            <\/div>\n           \n      <div class=\"cta-block hidden\">\n                <\/div>\n  <\/section>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":97,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-91221","page","type-page","status-publish","hentry","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Maladies rares - Global<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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