{"id":75429,"date":"2025-02-25T17:00:13","date_gmt":"2025-02-25T15:00:13","guid":{"rendered":"https:\/\/www.ipsen.com\/?page_id=75429"},"modified":"2025-07-28T06:38:42","modified_gmt":"2025-07-28T04:38:42","slug":"maladies-osseuses-rares","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/fr\/maladies-rares\/maladies-osseuses-rares\/","title":{"rendered":"Maladies osseuses 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\">\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\/science\/maladies-rares\/\">Maladies rares<\/a><\/li><li class=\"breadcrumb-item active\"><a class=\"link-pointer-events-none\" href=\"#\" aria-current=\"page\">Maladies osseuses rares<\/a><\/li><\/ol>\n            <\/nav>            <h1 class=\"visible\">Maladies osseuses 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\/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 active\" 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    <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 hidden\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                                            <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>Les personnes atteintes de maladies osseuses rares sont confront\u00e9es \u00e0 de nombreux d\u00e9fis, notamment des sympt\u00f4mes d\u00e9bilitants et douloureux, ainsi que de profondes cons\u00e9quences psychologiques, sociales et \u00e9conomiques.<\/p>\n<p>La fibrodysplasie ossifiante progressive (FOP) est une maladie g\u00e9n\u00e9tique gravement invalidante caract\u00e9ris\u00e9e par la formation d&#8217;os en dehors du squelette normal. Malgr\u00e9 les progr\u00e8s r\u00e9cents, les patients et leurs soignants sont toujours confront\u00e9s \u00e0 un parcours diagnostique prolong\u00e9, et le temps n\u00e9cessaire pour obtenir un diagnostic correct peut varier consid\u00e9rablement d&#8217;un individu \u00e0 l&#8217;autre.<\/p>\n<p>Pour relever ces d\u00e9fis et am\u00e9liorer la prise en charge des patients dans le monde entier, il est essentiel de sensibiliser les principaux publics aux besoins non satisfaits de la communaut\u00e9 FOP et de faire progresser notre compr\u00e9hension scientifique de cette maladie extr\u00eamement rare.<\/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\n    <section class=\"graphic-card graphics-old-layout bg-color-disabled bg-image-disabled bg-video-disabled bg-mobile-video-img-disabled\"    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                        <h3 class=\"charcoal-grey hidden heading-three\" role=\"heading\" aria-level=\"2\">\n                                                            <\/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-hidden=\"true\" aria-label=\"Pr\u00e9c\u00e9dent\" class=\"glider-graphic-card-prev\"><span><\/span><\/button>\n                                                    <button aria-hidden=\"true\" aria-label=\"Suivant\" class=\"glider-graphic-card-next\"><span><\/span><\/button>\n                                                <\/div>\n                                    \n                                <div class=\"glider-graphic-card\" tabindex=\"-1\">\n                                                                                                                        <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                        \n                                                                <!-- Graphic Card With OLD layout start here -->\n                                                                <div class=\"column-1\">\n                                                                                                                                                <div class=\"text-graph-img visible graphic-icon-enabled \">\n                                                                                                                                                                    <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/Earth.png\" alt=\"\" \/> \n                                                                                                                                                            <\/div>\n                                                                                                                                    <\/div>\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"text-graph-content\">\n                                                                                                                                                        <div class=\"text-graph-title\">\n                                                                                <h4 role=\"heading\" aria-level=\"3\">Pr\u00e9sence mondiale<\/h4>\n                                                                                <\/div>\n                                                                                                                                                <div class=\"text-graph-desc\">\n                                                                            <p><p>La fibrodysplasie ossifiante progressive (FOP) est l&#8217;une des maladies les plus rares au monde, avec environ 900 personnes atteintes dans le monde.<\/p>\n<\/p>\n                                                                        <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With OLD layout end here -->\n                                                        \n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                    <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                        \n                                                                <!-- Graphic Card With OLD layout start here -->\n                                                                <div class=\"column-1\">\n                                                                                                                                                <div class=\"text-graph-img visible graphic-icon-enabled \">\n                                                                                                                                                                    <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/Stethascope.png\" alt=\"\" \/> \n                                                                                                                                                            <\/div>\n                                                                                                                                    <\/div>\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"text-graph-content\">\n                                                                                                                                                        <div class=\"text-graph-title\">\n                                                                                <h4 role=\"heading\" aria-level=\"3\">Diagnostic<\/h4>\n                                                                                <\/div>\n                                                                                                                                                <div class=\"text-graph-desc\">\n                                                                            <p><p>La FOP est mal diagnostiqu\u00e9e chez un peu plus de la moiti\u00e9 des individus (52,5 %), les diagnostics erron\u00e9s les plus courants \u00e9tant le cancer, la fibromatose juv\u00e9nile et la myosite ossifiante.<\/p>\n<\/p>\n                                                                        <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With OLD layout end here -->\n                                                        \n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                    <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                        \n                                                                <!-- Graphic Card With OLD layout start here -->\n                                                                <div class=\"column-1\">\n                                                                                                                                                <div class=\"text-graph-img visible graphic-icon-enabled \">\n                                                                                                                                                                    <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/Search.png\" alt=\"\" \/> \n                                                                                                                                                            <\/div>\n                                                                                                                                    <\/div>\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"text-graph-content\">\n                                                                                                                                                        <div class=\"text-graph-title\">\n                                                                                <h4 role=\"heading\" aria-level=\"3\">Les maladies osseuses rares en bref<\/h4>\n                                                                                <\/div>\n                                                                                                                                                <div class=\"text-graph-desc\">\n                                                                            <p><p>Il existe plus de 460 maladies osseuses rares connues, qui repr\u00e9sentent 5 % des maladies rares connues et touchent des millions de personnes dans le monde. Malgr\u00e9 cela, seul 1 % de la recherche sur les maladies rares porte sur les maladies osseuses rares.<\/p>\n<\/p>\n                                                                        <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With OLD layout end here -->\n                                                        \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\" \n                                    src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2025\/07\/Nadine-FOP-img-02-hd.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                                    Fibrodysplasie ossifiante progressive (FOP)                                <\/h4>\n                                                    <\/div>\n                                                <ul>\n<li>La FOP provoque une ossification h\u00e9t\u00e9rotopique, une nouvelle formation osseuse permanente et anormale dans les tissus mous et conjonctifs, comme les muscles, les tendons et les ligaments.<\/li>\n<li>Il s&#8217;agit d&#8217;une maladie g\u00e9n\u00e9tique extr\u00eamement rare, caract\u00e9ris\u00e9e par des pouss\u00e9es inflammatoires qui d\u00e9butent dans l&#8217;enfance.<\/li>\n<li>L&#8217;ossification h\u00e9t\u00e9rotopique entra\u00eene de graves limitations fonctionnelles au niveau de la mobilit\u00e9, un handicap progressif et une r\u00e9duction de l&#8217;esp\u00e9rance de vie. En moyenne, les patients sont diagnostiqu\u00e9s \u00e0 l&#8217;\u00e2ge de 5 ans et leur esp\u00e9rance de vie m\u00e9diane est de 56 ans.<\/li>\n<\/ul>\n                            <a \n                            aria-label=\" about Fibrodysplasie ossifiante progressive (FOP)\"  \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<!--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":11,"featured_media":0,"parent":91221,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-75429","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 osseuses 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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