{"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\" 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\/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 h\u00e9patiques 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\">\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   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                          <div class=\"column-2\">\n                                                                    <div class=\"text-graph-content\">\n                                                                                                                                                        <div class=\"text-graph-title\">\n                                                                                    <h4>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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/07\/28062303\/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>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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/07\/28062302\/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>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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/07\/15093525\/Nadine-FOP-img-02-hd.jpg\" \n                                    alt=\"Fibrodysplasie ossifiante progressive (FOP)\" \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 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-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          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                                       \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\/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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/10\/29144511\/IMG_6401-1.jpg\" alt=\"Le paysage en \u00e9volution des maladies du foie : innovation, int\u00e9gration et impact\" title=\"Le paysage en \u00e9volution des maladies du foie : innovation, int\u00e9gration et impact\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n   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<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\/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\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/09\/12095947\/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\" title=\"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                                           <p class=\"text-div-para\">Journ\u00e9e de sensibilisation \u00e0 la CBP\u00a0: Confronter les pr\u00e9jug\u00e9s et faire entendre la voix des patients<\/p>\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                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Reconna\u00eetre les signes pr\u00e9cocement : am\u00e9liorer les r\u00e9sultats pour les enfants atteints de maladies rares du foie\u00a0\">\n                              <a title=\"Reconna\u00eetre les signes pr\u00e9cocement : am\u00e9liorer les r\u00e9sultats pour les enfants atteints de maladies rares du foie\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/reconnaitre-les-signes-precocement-ameliorer-les-resultats-pour-les-enfants-atteints-de-maladies-rares-du-foie\/\">\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\/09\/08092228\/Ipsen.com-thumbail.png\" alt=\"Reconna\u00eetre les signes pr\u00e9cocement : am\u00e9liorer les r\u00e9sultats pour les enfants atteints de maladies rares du foie\u00a0\" title=\"Reconna\u00eetre les signes pr\u00e9cocement : am\u00e9liorer les r\u00e9sultats pour les enfants atteints de maladies rares du foie\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:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">08 Septembre 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\">Reconna\u00eetre les signes pr\u00e9cocement : am\u00e9liorer les r\u00e9sultats pour les enfants atteints de maladies rares du foie\u00a0<\/p>\n                                          \n                                          <p>Le professeur Bj\u00f6rn Fischler, h\u00e9patologue p\u00e9diatrique \u00e0 l\u2019Institut Karolinska en Su\u00e8de, et Laure Dorey, directrice de l\u2019association fran\u00e7aise de patients AMFE et m\u00e8re d\u2019un enfant atteint d\u2019atr\u00e9sie des voies biliaires (AVB).<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Au-del\u00e0 de la fatigue: comprendre la fatigue dans la cholangite biliaire primitive\">\n                              <a title=\"Au-del\u00e0 de la fatigue: comprendre la fatigue dans la cholangite biliaire primitive\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/au-dela-de-la-fatigue-comprendre-la-fatigue-dans-la-cholangite-biliaire-primitive\/\">\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\/09\/01104708\/Ipsen_PBC-page_Thumbnail-v1.2-1.png\" alt=\"Au-del\u00e0 de la fatigue: comprendre la fatigue dans la cholangite biliaire primitive\" title=\"Au-del\u00e0 de la fatigue: comprendre la fatigue dans la cholangite biliaire primitive\" >\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\">01 Septembre 2025<\/span>\n                                      <span class=\"time-stamp visible\">1 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Au-del\u00e0 de la fatigue: comprendre la fatigue dans la cholangite biliaire primitive<\/p>\n                                          \n                                          <p>Fatigue is a distinct and debilitating condition that can have a significant impact on quality of life&#8230;<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Comprendre la CBP\u202f: G\u00e9rer l\u2019essentiel\u00a0\">\n                              <a title=\"Comprendre la CBP\u202f: G\u00e9rer l\u2019essentiel\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/comprendre-la-cbp-gerer-lessentiel\/\">\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\/08\/25132958\/Ipsen.com-thumbnail-1.png\" alt=\"Comprendre la CBP\u202f: G\u00e9rer l\u2019essentiel\u00a0\" title=\"Comprendre la CBP\u202f: G\u00e9rer l\u2019essentiel\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:#1e5ab2;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">25 Ao\u00fbt 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\">Comprendre la CBP\u202f: G\u00e9rer l\u2019essentiel\u00a0<\/p>\n                                          \n                                          <p>Sandra Silvestri, d\u2019Ipsen, a rencontr\u00e9 le Dr Laura Cristoferi, le Professeur Mark Swain et le Professeur David Jones pour explorer les derni\u00e8res donn\u00e9es probantes sur la prise en charge de la cholangite biliaire primitive (CBP), une maladie auto-immune rare.<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Un parcours de force et d&#8217;espoir : l&#8217;histoire de Joris et Maria\">\n                              <a title=\"Un parcours de force et d&#8217;espoir : l&#8217;histoire de Joris et Maria\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/un-parcours-de-force-et-despoir-lhistoire-de-joris-et-maria\/\">\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\/07\/07164041\/Joris-Mum-BG.jpg\" alt=\"Un parcours de force et d&#8217;espoir : l&#8217;histoire de Joris et Maria\" title=\"Un parcours de force et d&#8217;espoir : l&#8217;histoire de Joris et Maria\" >\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\">07 Juillet 2025<\/span>\n                                      <span class=\"time-stamp visible\">2 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Un parcours de force et d&#8217;espoir : l&#8217;histoire de Joris et Maria<\/p>\n                                          \n                                          <p>Joris est un gar\u00e7on de sept ans et demi, plein de vie, dont le parcours a exig\u00e9 beaucoup de force et espoir &#8211; de sa part comme de celle de ses proches. \u00c0 seulement quatre semaines, Joris a commenc\u00e9 \u00e0 pr\u00e9senter des sympt\u00f4mes inhabituels.<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"C\u00e9line et Suzanne : Vivre avec le syndrome d\u2019Alagille\">\n                              <a title=\"C\u00e9line et Suzanne : Vivre avec le syndrome d\u2019Alagille\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/celine-et-suzanne-vivre-avec-le-syndrome-dalagille\/\">\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\/05\/16093805\/Image1.jpg\" alt=\"C\u00e9line et Suzanne : Vivre avec le syndrome d\u2019Alagille\" title=\"C\u00e9line et Suzanne : Vivre avec le syndrome d\u2019Alagille\" >\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\">16 Mai 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\">C\u00e9line et Suzanne : Vivre avec le syndrome d\u2019Alagille<\/p>\n                                          \n                                          <p>\u00c0 seulement neuf ans, Suzanne est une jeune fille brillante et cr\u00e9ative qui aime danser, dessiner, explorer les bois et observer les oiseaux. Bien qu\u2019elle soit atteinte du syndrome d\u2019Alagille (SAG), une maladie g\u00e9n\u00e9tique rare, elle profite de la vie avec enthousiasme et curiosit\u00e9.<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\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:#1e5ab2;\">\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:#1e5ab2;\">\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                                        <\/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 v25.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\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\" href=\"https:\/\/www.ipsen.com\/fr\/maladies-rares\/maladies-osseuses-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Maladies osseuses rares - 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