{"id":75423,"date":"2025-02-25T16:59:59","date_gmt":"2025-02-25T14:59:59","guid":{"rendered":"https:\/\/www.ipsen.com\/?page_id=75423"},"modified":"2025-02-25T21:58:17","modified_gmt":"2025-02-25T19:58:17","slug":"maladie-hepatique-cholestatique-rare","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/fr\/maladie-hepatique-cholestatique-rare\/","title":{"rendered":"Maladies h\u00e9patiques cholestatiques rares"},"content":{"rendered":"    <section class=\"sub-page-banner \" style=\"background: linear-gradient(93.64deg, #224A81 2.99%, #2797D3 97.01%)\">\n        <div class=\"container content-sec\" role=\"main\" id=\"main\">\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 visible\"><a href=\"https:\/\/www.ipsen.com\/fr\/maladies-rares\/\">Maladies rares<\/a><\/li><li class=\"breadcrumb-item active\"><a class=\"link-pointer-events-none\" href=\"#\" aria-current=\"page\">Maladies h\u00e9patiques cholestatiques rares<\/a><\/li><\/ol>\n            <\/nav>            <h1 class=\"visible\">Maladies h\u00e9patiques cholestatiques rares<\/h1>\n            <p class=\"hidden\"><\/p>\n        <\/div>\n    <\/section>\n\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 \" href=\"https:\/\/www.ipsen.com\/fr\/maladies-rares\/\" tabindex=\"0\">Maladies rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link active\" href=\"https:\/\/www.ipsen.com\/fr\/maladie-hepatique-cholestatique-rare\/\" tabindex=\"0\">Maladies h\u00e9patiques cholestatiques rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link \" href=\"https:\/\/www.ipsen.com\/fr\/maladies-osseuses-rares\/\" tabindex=\"0\">Maladies osseuses rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link \" href=\"https:\/\/www.ipsen.com\/fr\/troubles-endocriniens-de-la-croissance\/\" tabindex=\"0\">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    <section class=\"title-text \">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-color:#DBEAF5;\">\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash hidden\">\n                                            <span class=\"dash\"><\/span> \n                        <p class=\"heading-para\">\n                                                    <\/p>\n                                        \n                <\/div>\n\n                <!-- If subtitle is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                                            <h2 class=\"heading-para\">\n                            Transformer les perspectives pour les personnes atteintes d&#8217;une maladie h\u00e9patique rare                        <\/h2>\n                    \n                <\/div>\n                \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p><p>Les maladies cholestatiques rares du foie englobent un groupe de maladies rares qui affectent les voies biliaires, provoquant une maladie progressive du foie et des sympt\u00f4mes tels que des d\u00e9mangeaisons intenses et de la fatigue. Les sympt\u00f4mes peuvent \u00eatre gravement d\u00e9bilitants, mais ils sont souvent invisibles et incompris. La plupart des maladies cholestatiques rares du foie ne disposent que de traitements approuv\u00e9s limit\u00e9s. En raison de leur raret\u00e9, les patients doivent relever d&#8217;innombrables d\u00e9fis au quotidien. Le parcours vers le diagnostic peut \u00eatre long et tortueux. Les patients se sentent souvent isol\u00e9s et peu \u00e9cout\u00e9s. Ils se sentent parfois stigmatis\u00e9s et incompris. Le besoin d&#8217;innovation est \u00e9norme.<\/p>\n<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n<!--Graphics Cards Carousel Start Here-->\n    <section class=\"graphic-card \"  data-displaycards=\"2\">\n        <div class=\"container\">\n            <div class=\"text-graph-inner\">\n                <div class=\"row\">\n                    <!--Graphic info section-->\n                    <div class=\"column-1 col-xl-12 col-md-12 col-sm-12\">\n                        <div class=\"text-graph-heading\">\n                            <h2 class=\"charcoal-grey hidden\"><\/h3>\n                            <p class=\"text-graph-para charcoal-grey hidden\"><\/p>\n                        <\/div>\n                    <\/div><!--Graphic info section over here -->\n\n                    <!--Graphic detail section-->\n                    <div class=\"column-2 col-xl-12 col-md-12 col-sm-12\">\n                        <!-- graphic-card carousel start here -->\n                                                    <div class=\"text-graph-carousel\">\n                                <div class=\"glider-contain multiple\">\n                                                                                    <div class=\"text-graph-content-btn\">\n                                                    <button aria-label=\"Pr\u00e9c\u00e9dent\" class=\"glider-graphic-card-prev\"><span><\/span><\/button>\n                                                    <button aria-label=\"Suivant\" class=\"glider-graphic-card-next\"><span><\/span><\/button>\n                                                <\/div>\n                                    \n                                <div class=\"glider-graphic-card\">\n                                                                                                                    <div class=\"text-graphic\">\n                                                <div class=\"text-graph-row\">\n                                                    <div class=\"column-1\">\n                                                                                                                        <div class=\"text-graph-img visible\">\n                                                                                                                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173940\/Capture1-1-1.png\" alt=\"Le besoin d'innovation\" title=\"Le besoin d'innovation\" \/> \n                                                                                                                                    <\/div>\n                                                                                                            <\/div>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Le besoin d&#8217;innovation<\/h3>\n                                                            <\/div>\n                                                            <div class=\"text-graph-desc\">\n                                                                <p><p>Il existe au moins 20 maladies h\u00e9patiques rares diff\u00e9rentes et chacune d&#8217;entre elles est unique.<\/p>\n<\/p>\n                                                            <\/div>\n                                                        <\/div>\n                                                    <\/div>\n                                                <\/div>\n                                            <\/div>\n                                                                                                                                                            <div class=\"text-graphic\">\n                                                <div class=\"text-graph-row\">\n                                                    <div class=\"column-1\">\n                                                                                                                        <div class=\"text-graph-img visible\">\n                                                                                                                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173941\/Capture2-1-1.png\" alt=\"Rare atteinte du foie\" title=\"Rare atteinte du foie\" \/> \n                                                                                                                                    <\/div>\n                                                                                                            <\/div>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Rare atteinte du foie<\/h3>\n                                                            <\/div>\n                                                            <div class=\"text-graph-desc\">\n                                                                <p><p>Les maladies h\u00e9patiques rares sont plus fr\u00e9quentes qu&#8217;on ne le pense, puisqu&#8217;elles touchent environ 1 personne sur 50 000 \u00e0 100 000.<\/p>\n<\/p>\n                                                            <\/div>\n                                                        <\/div>\n                                                    <\/div>\n                                                <\/div>\n                                            <\/div>\n                                                                                                                                                            <div class=\"text-graphic\">\n                                                <div class=\"text-graph-row\">\n                                                    <div class=\"column-1\">\n                                                                                                                        <div class=\"text-graph-img visible\">\n                                                                                                                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173942\/Capture3-1-1.png\" alt=\"Des connaissances limit\u00e9es ou manquantes\" title=\"Des connaissances limit\u00e9es ou manquantes\" \/> \n                                                                                                                                    <\/div>\n                                                                                                            <\/div>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Des connaissances limit\u00e9es ou manquantes<\/h3>\n                                                            <\/div>\n                                                            <div class=\"text-graph-desc\">\n                                                                <p><p>La plupart des professionnels de sant\u00e9 ont des connaissances limit\u00e9es en raison de la raret\u00e9 de ces maladies. Cela peut entra\u00eener un retard de diagnostic, les patients devant subir des examens et des rendez-vous fastidieux, et \u00eatre orient\u00e9s vers des sp\u00e9cialistes non n\u00e9cessaires dans le but de traiter les sympt\u00f4mes.<\/p>\n<\/p>\n                                                            <\/div>\n                                                        <\/div>\n                                                    <\/div>\n                                                <\/div>\n                                            <\/div>\n                                                                                                            <\/div>\n                            <\/div>\n                                            <\/div> <!-- graphic-card carousel end here -->\n                <\/div> <!--Graphic detail section over here with 12 grid -->   \n            <\/div><!--row ended here-->\n        <\/div> <!-- graph-inner ended here -->\n        \n            <div class=\"more-result-btn\">\n                                            <\/div>\n        <\/div> <!--Container class ended here -->\n    <\/section>\n<!--Graphics Cards Carousel End Here-->\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\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25172937\/cholestatic-2.jpg\" alt=\"Media Image\" title=\"Media Image\">\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                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Cholangite biliaire primitive (CBP)                        <\/p>\n                        <ul>\n<li>La CBP est une maladie auto-immune rare et progressive du foie, caract\u00e9ris\u00e9e par une accumulation de bile et de toxines (cholestase) et une inflammation chronique qui provoquent une fibrose (cicatrisation) irr\u00e9versible du foie et la destruction des voies biliaires.<\/li>\n<li>La CBP touche principalement les femmes entre 40 et 60 ans.<\/li>\n<li>La CBP est une maladie qui dure toute la vie et qui peut s&#8217;aggraver au fil du temps si elle n&#8217;est pas trait\u00e9e efficacement, ce qui peut entra\u00eener une greffe du foie et, dans certains cas, un d\u00e9c\u00e8s pr\u00e9matur\u00e9.<\/li>\n<li>La CBP affecte la vie quotidienne, les malades ressentant souvent des sympt\u00f4mes de fatigue s\u00e9v\u00e8re et des d\u00e9mangeaisons d\u00e9bilitantes (prurit).<\/li>\n<\/ul>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner section-reverse\">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row section-reverse\">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173029\/cholestatic-1.jpg\" alt=\"Media Image\" title=\"Media Image\">\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                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Cholestase intrah\u00e9patique familiale progressive (PFIC)                        <\/p>\n                        <ul>\n<li>La PFIC d\u00e9signe un ensemble de maladies g\u00e9n\u00e9tiques rares dans lesquelles le foie a du mal \u00e0 drainer l&#8217;acide biliaire, ce qui provoque une accumulation de bile dans le foie, connue sous le nom de cholestase intrah\u00e9patique.<\/li>\n<li>Bien que la PFIC puisse se manifester \u00e0 l&#8217;\u00e2ge adulte, c&#8217;est g\u00e9n\u00e9ralement chez les nourrissons et les jeunes enfants qu&#8217;elle se manifeste et qu&#8217;elle est la plus agressive.<\/li>\n<li>La PFIC peut \u00e9voluer rapidement et provoquer une cirrhose (cicatrisation \u00e0 long terme).<\/li>\n<li>Le sympt\u00f4me le plus invalidant de la PFIC est le prurit (d\u00e9mangeaisons intenses), qui peut \u00eatre si grave qu&#8217;il entra\u00eene une mutation de la peau, une perte de sommeil, de l&#8217;irritabilit\u00e9, une baisse de l&#8217;attention et une diminution des performances scolaires.<\/li>\n<\/ul>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\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\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173355\/cholestatic-4.jpg\" alt=\"Media Image\" title=\"Media Image\">\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                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Syndrome d&#8217;Alagille (ALGS)                        <\/p>\n                        <ul>\n<li>L&#8217;ALGS est une maladie g\u00e9n\u00e9tique rare du foie qui affecte principalement les b\u00e9b\u00e9s et les enfants en bas \u00e2ge, o\u00f9 les acides biliaires toxiques s&#8217;accumulent en raison du fait que les patients ont des canaux biliaires moins nombreux que la normale, r\u00e9tr\u00e9cis ou malform\u00e9s.<\/li>\n<li>L&#8217;ALGS peut affecter tous les organes du corps, y compris le foie, le c\u0153ur et les reins, et provoque des anomalies de la peau, du squelette et des yeux.<\/li>\n<li>L&#8217;un de ses principaux sympt\u00f4mes est un prurit intraitable, qui peut \u00eatre si grave qu&#8217;il conduit \u00e0 une greffe de foie.<\/li>\n<\/ul>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner section-reverse\">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row section-reverse\">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173436\/cholestatic-5.jpg\" alt=\"Media Image\" title=\"Media Image\">\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                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Atr\u00e9sie des voies biliaires (BA)                        <\/p>\n                        <ul>\n<li>La BA est une maladie qui touche les enfants lorsque les canaux biliaires \u00e0 l&#8217;ext\u00e9rieur et \u00e0 l&#8217;int\u00e9rieur du foie sont endommag\u00e9s et obstru\u00e9s.<\/li>\n<li>La bile ne pouvant s&#8217;\u00e9couler dans l&#8217;intestin, elle s&#8217;accumule dans le foie et l&#8217;endommage. Ces l\u00e9sions entra\u00eenent une cicatrisation, une perte de tissu et de fonction du foie et une cirrhose.<\/li>\n<\/ul>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\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\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173543\/cholestatic-3.jpg\" alt=\"Media Image\" title=\"Media Image\">\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                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Cholangite scl\u00e9rosante primitive (CSP)                        <\/p>\n                        <ul>\n<li>La CSP est une maladie rare du foie \u00e0 m\u00e9diation immunitaire dans laquelle l&#8217;inflammation et la fibrose entra\u00eenent le durcissement et le r\u00e9tr\u00e9cissement progressifs des canaux biliaires \u00e0 l&#8217;int\u00e9rieur et \u00e0 l&#8217;ext\u00e9rieur du foie.<\/li>\n<li>Les sympt\u00f4mes peuvent inclure des douleurs abdominales, des d\u00e9mangeaisons cutan\u00e9es, des diarrh\u00e9es, une jaunisse, de la fatigue et une sensation de faiblesse.<\/li>\n<li>De nombreux patients ne pr\u00e9sentent aucun sympt\u00f4me au moment du diagnostic de la CSP.<\/li>\n<li>Pour de nombreuses personnes, une greffe de foie est le seul traitement disponible lorsque la maladie a progress\u00e9 jusqu&#8217;\u00e0 l&#8217;insuffisance h\u00e9patique.<\/li>\n<\/ul>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n\n\n\n<!--Regular card with carousel -->\n  <section class=\"p-slider \" >\n      <div class=\"slider-heading-container\">\n          <h2 class=\"slider-title visible\">Actualit\u00e9s sur les maladies rares <\/h2>\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-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-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=\"Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0\">\n                              <a title=\"Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/une-vie-avec-une-maladie-hepatique-rare-des-defis-uniques-des-experiences-partagees\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/03\/03113721\/Living-with-Rare-Disease.jpg\" alt=\"Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0\" title=\"Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">26 Mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0<\/p>\n                                          \n                                          <p>Les maladies cholestatiques du foie constituent un groupe de maladies rares mais importantes qui touchent aussi bien les enfants que les adultes. Trois de ces maladies, la cholangite biliaire primitive (CBP), la cholestase intrah\u00e9patique familiale progressive (CIFP) et le Syndrome d\u2019Alagille (ALGS),<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\">\n                              <a title=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/de-la-poussiere-au-diamant-deconstruire-les-mythes-sur-linnovation-dans-les-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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/03\/24105342\/Jennifer-ODRD-LinkedIn-Image_16x9-1.png\" alt=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\" title=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">24 Mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">4 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0<\/p>\n                                          \n                                          <p>Dans les histoires de super-h\u00e9ros, on raconte parfois qu\u2019en serrant du charbon avec une force incroyable, on peut cr\u00e9er un diamant parfait en quelques secondes. Bien s\u00fbr, ce n\u2019est qu\u2019un mythe ! En r\u00e9alit\u00e9, les diamants sont rares et mettent des millions d\u2019ann\u00e9es \u00e0 se former sous des conditions sp\u00e9ci<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\">\n                              <a title=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/lever-les-obstacles-a-linnovation-dans-les-maladies-rares-reflexions-du-world-epa-congress\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/03\/10101259\/Image1.jpg\" alt=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\" title=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">10 Mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">4 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0<\/p>\n                                          \n                                          <p>Pour les personnes atteintes d&#8217;une maladie rare, chaque jour sans traitement est un jour de trop. Lors du World Evidence, Pricing and Access Congress \u00e0 Amsterdam, j&#8217;ai particip\u00e9 \u00e0 une table ronde sur l&#8217;acc\u00e8s \u00e0 long terme aux innovations th\u00e9rapeutiques pour les maladies rares. Cette discussion m\u2019a ra<\/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 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\">\n                              <a title=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/journee-des-maladies-rares-2025-imaginer-plus-pour-la-communaute-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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/27143811\/Ipsen_Rare-Disease-Day-2025_MyIpsen-Banner.png\" alt=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\" title=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">01 Mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0<\/p>\n                                          \n                                          <p>Vivre avec une maladie rare repr\u00e9sente un immense d\u00e9fi quotidien pour des millions de personnes dans le monde. Pour ces personnes et leurs familles, la r\u00e9silience est essentielle et l&#8217;espoir devient une bou\u00e9e de sauvetage.<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\">\n                              <a title=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/imaginer-plus-pour-les-maladies-rares-reflexions-sur-le-chemin-a-parcourir\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/27143811\/Ipsen_Rare-Disease-Day-2025_MyIpsen-Banner.png\" alt=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\" title=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">27 F\u00e9vrier 2025<\/span>\n                                      <span class=\"time-stamp visible\">4 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir<\/p>\n                                          \n                                          <p>Un article de Josep Catlla, Vice-Pr\u00e9sident Ex\u00e9cutif, Directeur des Affaires Corporate<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\">\n                              <a title=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/ensemble-pour-la-journee-de-sensibilisation-au-syndrome-dalagille-sag\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185549\/Image1.jpg\" alt=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\" title=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">22 Janvier 2025<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)<\/p>\n                                          \n                                          <p>Chaque ann\u00e9e, 1 enfant sur 30 000 pr\u00e9sente le syndrome d\u2019Alagille (SAG)1,2 \u00e0 la naissance. En janvier, nous nous joignons \u00e0 l\u2019Alagille Syndrome Alliance pour contribuer \u00e0 la sensibilisation de cette maladie h\u00e9patique cholestatique rare, et \u00e0 \u00eatre #ALGSAware (au courant du SAG).<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&#8217;atr\u00e9sie des voies biliaires\u00a0\">\n                              <a title=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&#8217;atr\u00e9sie des voies biliaires\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/mobilisation-pour-les-bebes-atteints-datresie-des-voies-biliaires\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/11\/29180516\/Ipsen.com-thumbnail.jpg\" alt=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&#8217;atr\u00e9sie des voies biliaires\u00a0\" title=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&#8217;atr\u00e9sie des voies biliaires\u00a0\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">30 Novembre 2024<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Mobilisation pour les b\u00e9b\u00e9s atteints d&#8217;atr\u00e9sie des voies biliaires\u00a0<\/p>\n                                          \n                                          <p>L&#8217;atr\u00e9sie des voies biliaires (AVB) est une maladie h\u00e9patique rare qui appara\u00eet g\u00e9n\u00e9ralement au cours du premier mois de vie d&#8217;un nouveau-n\u00e9.1 Cette maladie est caract\u00e9ris\u00e9e par le d\u00e9veloppement anormal ou l\u2019obstruction des voies biliaires \u00e0 l\u2019int\u00e9rieur du foie peu&#8230;<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\">\n                              <a title=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/accompagnement-dun-etre-cher-souffrant-de-cholestase-intrahepatique-familiale-progressive-cifp-lhistoire-de-francesca\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/10\/04092750\/Image1.jpg\" alt=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\" title=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">04 Octobre 2024<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca<\/p>\n                                          \n                                          <p>Quelques mois apr\u00e8s la naissance d\u2019Eva Luna, sa m\u00e8re Francesca a r\u00e9alis\u00e9 que quelque chose n\u2019allait pas. En quelques jours, leur monde a bascul\u00e9 lorsqu\u2019il s\u2019est av\u00e9r\u00e9 que sa fille \u00e9tait atteinte d\u2019une maladie h\u00e9patique rare, connue sous le nom de cholestase intrah\u00e9patique familiale progressive (CIFP<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\">\n                              <a title=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/un-partenariat-pour-le-progres-limportance-de-la-collaboration-pour-la-sensibilisation-a-la-cholangite-biliaire-primitive-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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/09\/10094340\/Ipsen.com-Thumbnail-scaled.jpeg\" alt=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\" title=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">12 Septembre 2024<\/span>\n                                      <span class=\"time-stamp visible\">5 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0<\/p>\n                                          \n                                          <p>Le mois de septembre est d\u00e9di\u00e9 \u00e0 la sensibilisation \u00e0 la cholangite biliaire primitive, ce qui me conduit \u00e0 repenser aux difficult\u00e9s auxquelles sont confront\u00e9es les personnes vivant avec une maladie cholestatique rare. La Journ\u00e9e de sensibilisation \u00e0 la CBP, le 10 septembre, n\u2019est pas seulement une <\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Offrir une meilleure prise en charge : Journ\u00e9e de sensibilisation \u00e0 la CBP 2024\u00a0\">\n                              <a title=\"Offrir une meilleure prise en charge : Journ\u00e9e de sensibilisation \u00e0 la CBP 2024\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/offrir-une-meilleure-prise-en-charge-journee-de-sensibilisation-a-la-cbp-2024\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/09\/03105852\/Ipsen.com-Thumbnail.jpg\" alt=\"Offrir une meilleure prise en charge : Journ\u00e9e de sensibilisation \u00e0 la CBP 2024\u00a0\" title=\"Offrir une meilleure prise en charge : Journ\u00e9e de sensibilisation \u00e0 la CBP 2024\u00a0\" >\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">03 Septembre 2024<\/span>\n                                      <span class=\"time-stamp visible\">2 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Offrir une meilleure prise en charge : Journ\u00e9e de sensibilisation \u00e0 la CBP 2024\u00a0<\/p>\n                                          \n                                          <p>\u201cWe&#8217;re often asked, what is the PBC journey? And the challenge is that, well, the PBC journey doesn&#8217;t exist. There are thousands and thousands of patients around the world, and each of them have an individual journey.\u201d\u00a0<\/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":11,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-75423","page","type-page","status-publish","hentry","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Maladies h\u00e9patiques cholestatiques 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\" href=\"https:\/\/www.ipsen.com\/fr\/maladie-hepatique-cholestatique-rare\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Maladies h\u00e9patiques cholestatiques rares - 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