{"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":"2025-02-25T21:57:54","modified_gmt":"2025-02-25T19:57:54","slug":"maladies-osseuses-rares","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/fr\/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\/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\/maladies-rares\/\" tabindex=\"0\">Maladies rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link \" href=\"https:\/\/www.ipsen.com\/fr\/maladie-hepatique-cholestatique-rare\/\" tabindex=\"0\">Maladies h\u00e9patiques cholestatiques rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link active\" href=\"https:\/\/www.ipsen.com\/fr\/maladies-osseuses-rares\/\" tabindex=\"0\">Maladies osseuses rares<\/a>\n                  <\/li>\n                              <li class=\"media-list-items\">\n                      <a class=\"media-item-link \" href=\"https:\/\/www.ipsen.com\/fr\/troubles-endocriniens-de-la-croissance\/\" tabindex=\"0\">Troubles endocriniens de la croissance<\/a>\n                  <\/li>\n                      <\/ul>\n          <div id=\"navTabArrows\">\n              <div class=\"tab-nav-arrows\" id=\"tab-nav-prev\"><\/div>\n              <div class=\"tab-nav-arrows\" id=\"tab-nav-next\"><\/div>\n          <\/div>\n        <\/div>\n      <\/div>\n<\/section>\n\n    <section class=\"title-text \">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-color:#DBEAF5;\">\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash hidden\">\n                                            <span class=\"dash\"><\/span> \n                        <p class=\"heading-para\">\n                                                    <\/p>\n                                        \n                <\/div>\n\n                <!-- If subtitle is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                                            <h2 class=\"heading-para\">\n                            D\u00e9velopper de nouvelles solutions pour les personnes atteintes de maladies osseuses rares                        <\/h2>\n                    \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&rsquo;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&rsquo;un individu \u00e0 l&rsquo;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    <section class=\"graphic-card \"  data-displaycards=\"2\">\n        <div class=\"container\">\n            <div class=\"text-graph-inner\">\n                <div class=\"row\">\n                    <!--Graphic info section-->\n                    <div class=\"column-1 col-xl-12 col-md-12 col-sm-12\">\n                        <div class=\"text-graph-heading\">\n                            <h2 class=\"charcoal-grey hidden\"><\/h3>\n                            <p class=\"text-graph-para charcoal-grey hidden\"><\/p>\n                        <\/div>\n                    <\/div><!--Graphic info section over here -->\n\n                    <!--Graphic detail section-->\n                    <div class=\"column-2 col-xl-12 col-md-12 col-sm-12\">\n                        <!-- graphic-card carousel start here -->\n                                                    <div class=\"text-graph-carousel\">\n                                <div class=\"glider-contain multiple\">\n                                                                                    <div class=\"text-graph-content-btn\">\n                                                    <button aria-label=\"Pr\u00e9c\u00e9dent\" class=\"glider-graphic-card-prev\"><span><\/span><\/button>\n                                                    <button aria-label=\"Suivant\" class=\"glider-graphic-card-next\"><span><\/span><\/button>\n                                                <\/div>\n                                    \n                                <div class=\"glider-graphic-card\">\n                                                                                                                    <div class=\"text-graphic\">\n                                                <div class=\"text-graph-row\">\n                                                    <div class=\"column-1\">\n                                                                                                                        <div class=\"text-graph-img visible\">\n                                                                                                                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173952\/Capture4-1.png\" alt=\"Pr\u00e9sence mondiale\" title=\"Pr\u00e9sence mondiale\" \/> \n                                                                                                                                    <\/div>\n                                                                                                            <\/div>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Pr\u00e9sence mondiale<\/h3>\n                                                            <\/div>\n                                                            <div class=\"text-graph-desc\">\n                                                                <p><p>La fibrodysplasie ossifiante progressive (FOP) est l&rsquo;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                                                <\/div>\n                                            <\/div>\n                                                                                                                                                            <div class=\"text-graphic\">\n                                                <div class=\"text-graph-row\">\n                                                    <div class=\"column-1\">\n                                                                                                                        <div class=\"text-graph-img visible\">\n                                                                                                                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173953\/capture-5.png\" alt=\"Diagnostic\" title=\"Diagnostic\" \/> \n                                                                                                                                    <\/div>\n                                                                                                            <\/div>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Diagnostic<\/h3>\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                                                <\/div>\n                                            <\/div>\n                                                                                                                                                            <div class=\"text-graphic\">\n                                                <div class=\"text-graph-row\">\n                                                    <div class=\"column-1\">\n                                                                                                                        <div class=\"text-graph-img visible\">\n                                                                                                                                            <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/25173954\/Capture6.png\" alt=\"Les maladies osseuses rares en bref\" title=\"Les maladies osseuses rares en bref\" \/> \n                                                                                                                                    <\/div>\n                                                                                                            <\/div>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Les maladies osseuses rares en bref<\/h3>\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                                                <\/div>\n                                            <\/div>\n                                                                                                            <\/div>\n                            <\/div>\n                                            <\/div> <!-- graphic-card carousel end here -->\n                <\/div> <!--Graphic detail section over here with 12 grid -->   \n            <\/div><!--row ended here-->\n        <\/div> <!-- graph-inner ended here -->\n        \n            <div class=\"more-result-btn\">\n                                            <\/div>\n        <\/div> <!--Container class ended here -->\n    <\/section>\n<!--Graphics Cards Carousel End Here-->\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner \">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row \">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/05\/05131704\/Module-3-%E2%80%93-Patients-strategy_Nadine-FOP-img-02-HD_06.png\" alt=\"Media Image\" title=\"Media Image\">\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Fibrodysplasie ossifiante progressive (FOP)                        <\/p>\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&rsquo;agit d&rsquo;une maladie g\u00e9n\u00e9tique extr\u00eamement rare, caract\u00e9ris\u00e9e par des pouss\u00e9es inflammatoires qui d\u00e9butent dans l&rsquo;enfance.<\/li>\n<li>L&rsquo;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&rsquo;esp\u00e9rance de vie. En moyenne, les patients sont diagnostiqu\u00e9s \u00e0 l&rsquo;\u00e2ge de 5 ans et leur esp\u00e9rance de vie m\u00e9diane est de 56 ans.<\/li>\n<\/ul>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n\n\n\n<!--Regular card with carousel -->\n  <section class=\"p-slider \" >\n      <div class=\"slider-heading-container\">\n          <h2 class=\"slider-title visible\">Actualit\u00e9s sur les maladies rares <\/h2>\n          <p class=\"charcoal-grey hidden\"><\/p>\n      <\/div>\n              \n            <!-- glider insert -->\n            <div class=\"glider-contain multiple\">\n                                    <!-- buttons -->\n                    <div class=\"slider-btns\">\n                    <button aria-label=\"Pr\u00e9c\u00e9dent\" aria-labelledby=\"glider-product-prev\" role=\"button\" title=\"Pr\u00e9c\u00e9dent\" class=\"glider-product-prev\">\n                      <span style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/blue-left-arrow.png);\"><\/span>\n                    <\/button>\n                    <button aria-label=\"Suivant\" aria-labelledby=\"glider-product-next\" role=\"button\" title=\"Suivant\" class=\"glider-product-next\">\n                      <span style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/blue-right-arrow.png);\"><\/span>\n                    <\/button>\n                <\/div>\n                                    <div class=\"glider-product\">\n                                                  <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"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:#224a81;\">\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:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">26 mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0<\/p>\n                                          \n                                          <p>Les maladies cholestatiques du foie constituent un groupe de maladies rares mais importantes qui touchent aussi bien les enfants que les adultes. Trois de ces maladies, la cholangite biliaire primitive (CBP), la cholestase intrah\u00e9patique familiale progressive (CIFP) et le Syndrome d\u2019Alagille (ALGS),<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\">\n                              <a title=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/de-la-poussiere-au-diamant-deconstruire-les-mythes-sur-linnovation-dans-les-maladies-rares\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/03\/24105342\/Jennifer-ODRD-LinkedIn-Image_16x9-1.png\" alt=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\" title=\"De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">24 mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">4 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">De la poussi\u00e8re au diamant : D\u00e9construire les mythes sur l\u2019innovation dans les maladies rares\u00a0<\/p>\n                                          \n                                          <p>Dans les histoires de super-h\u00e9ros, on raconte parfois qu\u2019en serrant du charbon avec une force incroyable, on peut cr\u00e9er un diamant parfait en quelques secondes. Bien s\u00fbr, ce n\u2019est qu\u2019un mythe ! En r\u00e9alit\u00e9, les diamants sont rares et mettent des millions d\u2019ann\u00e9es \u00e0 se former sous des conditions sp\u00e9ci<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\">\n                              <a title=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/lever-les-obstacles-a-linnovation-dans-les-maladies-rares-reflexions-du-world-epa-congress\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/03\/10101259\/Image1.jpg\" alt=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\" title=\"Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">10 mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">4 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Lever les obstacles \u00e0 l\u2019innovation dans les maladies rares: R\u00e9flexions du World EPA Congress\u00a0<\/p>\n                                          \n                                          <p>Pour les personnes atteintes d&rsquo;une maladie rare, chaque jour sans traitement est un jour de trop. Lors du World Evidence, Pricing and Access Congress \u00e0 Amsterdam, j&rsquo;ai particip\u00e9 \u00e0 une table ronde sur l&rsquo;acc\u00e8s \u00e0 long terme aux innovations th\u00e9rapeutiques pour les maladies rares. Cette discussion m\u2019a ra<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\">\n                              <a title=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/journee-des-maladies-rares-2025-imaginer-plus-pour-la-communaute-des-maladies-rares\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/27143811\/Ipsen_Rare-Disease-Day-2025_MyIpsen-Banner.png\" alt=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\" title=\"Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">01 mars 2025<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Journ\u00e9e des maladies rares 2025: Imaginer plus pour la communaut\u00e9 des maladies rares\u00a0\u00a0<\/p>\n                                          \n                                          <p>Vivre avec une maladie rare repr\u00e9sente un immense d\u00e9fi quotidien pour des millions de personnes dans le monde. Pour ces personnes et leurs familles, la r\u00e9silience est essentielle et l&rsquo;espoir devient une bou\u00e9e de sauvetage.<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\">\n                              <a title=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/imaginer-plus-pour-les-maladies-rares-reflexions-sur-le-chemin-a-parcourir\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/02\/27143811\/Ipsen_Rare-Disease-Day-2025_MyIpsen-Banner.png\" alt=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\" title=\"Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">27 f\u00e9vrier 2025<\/span>\n                                      <span class=\"time-stamp visible\">4 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Imaginer plus pour les maladies rares : r\u00e9flexions sur le chemin \u00e0 parcourir<\/p>\n                                          \n                                          <p>Un article de Josep Catlla, Vice-Pr\u00e9sident Ex\u00e9cutif, Directeur des Affaires Corporate<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\">\n                              <a title=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/ensemble-pour-la-journee-de-sensibilisation-au-syndrome-dalagille-sag\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2025\/01\/14185549\/Image1.jpg\" alt=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\" title=\"Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">22 janvier 2025<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Ensemble pour la journ\u00e9e de sensibilisation au syndrome d\u2019Alagille (SAG)<\/p>\n                                          \n                                          <p>Chaque ann\u00e9e, 1 enfant sur 30 000 pr\u00e9sente le syndrome d\u2019Alagille (SAG)1,2 \u00e0 la naissance. En janvier, nous nous joignons \u00e0 l\u2019Alagille Syndrome Alliance pour contribuer \u00e0 la sensibilisation de cette maladie h\u00e9patique cholestatique rare, et \u00e0 \u00eatre #ALGSAware (au courant du SAG).<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&rsquo;atr\u00e9sie des voies biliaires\u00a0\">\n                              <a title=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&rsquo;atr\u00e9sie des voies biliaires\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/mobilisation-pour-les-bebes-atteints-datresie-des-voies-biliaires\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/11\/29180516\/Ipsen.com-thumbnail.jpg\" alt=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&rsquo;atr\u00e9sie des voies biliaires\u00a0\" title=\"Mobilisation pour les b\u00e9b\u00e9s atteints d&rsquo;atr\u00e9sie des voies biliaires\u00a0\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">30 novembre 2024<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Mobilisation pour les b\u00e9b\u00e9s atteints d&rsquo;atr\u00e9sie des voies biliaires\u00a0<\/p>\n                                          \n                                          <p>L&rsquo;atr\u00e9sie des voies biliaires (AVB) est une maladie h\u00e9patique rare qui appara\u00eet g\u00e9n\u00e9ralement au cours du premier mois de vie d&rsquo;un nouveau-n\u00e9.1 Cette maladie est caract\u00e9ris\u00e9e par le d\u00e9veloppement anormal ou l\u2019obstruction des voies biliaires \u00e0 l\u2019int\u00e9rieur du foie peu&#8230;<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\">\n                              <a title=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/accompagnement-dun-etre-cher-souffrant-de-cholestase-intrahepatique-familiale-progressive-cifp-lhistoire-de-francesca\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/10\/04092750\/Image1.jpg\" alt=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\" title=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">04 octobre 2024<\/span>\n                                      <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca<\/p>\n                                          \n                                          <p>Quelques mois apr\u00e8s la naissance d\u2019Eva Luna, sa m\u00e8re Francesca a r\u00e9alis\u00e9 que quelque chose n\u2019allait pas. En quelques jours, leur monde a bascul\u00e9 lorsqu\u2019il s\u2019est av\u00e9r\u00e9 que sa fille \u00e9tait atteinte d\u2019une maladie h\u00e9patique rare, connue sous le nom de cholestase intrah\u00e9patique familiale progressive (CIFP<\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                                    <!-- product box-latest story listing-->\n                              <div class=\"product-box\" aria-label=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\">\n                              <a title=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\"  href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/un-partenariat-pour-le-progres-limportance-de-la-collaboration-pour-la-sensibilisation-a-la-cholangite-biliaire-primitive-cbp\/\">\n                                  <!-- img-container -->\n                                  <div class=\"p-img-container\">\n                                    <div class=\"p-img\">                                    \n                                    \n                                                                                      <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/09\/10094340\/Ipsen.com-Thumbnail-scaled.jpeg\" alt=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\" title=\"Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0\" >\n                                                                                  \n                                    <\/div>\n                                  <\/div>\n                                  <!-- text-container -->\n                                  <div class=\"p-box-text\">\n                                                                          <button tabindex=\"-1\" class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\">\n                                            Maladies Rares                                        <\/button>\n                                                                            <span class=\"time-stamp visible\">12 septembre 2024<\/span>\n                                      <span class=\"time-stamp visible\">5 \u00a0mn de lecture<\/span>\n                                      <div class=\"text-div\">\n                                       \n                                           <p class=\"text-div-para\">Un partenariat pour le progr\u00e8s : l\u2019importance de la collaboration pour la sensibilisation \u00e0 la cholangite biliaire primitive (CBP)\u202f\u00a0<\/p>\n                                          \n                                          <p>Le mois de septembre est d\u00e9di\u00e9 \u00e0 la sensibilisation \u00e0 la cholangite biliaire primitive, ce qui me conduit \u00e0 repenser aux difficult\u00e9s auxquelles sont confront\u00e9es les personnes vivant avec une maladie cholestatique rare. La Journ\u00e9e de sensibilisation \u00e0 la CBP, le 10 septembre, n\u2019est pas seulement une <\/p>\n                                      <\/div>\n                                  <\/div>\n                                  <\/a>\n                                <\/div>\n                                        <\/div>\n            <\/div>\n           \n      <div class=\"cta-block hidden\">\n                <\/div>\n  <\/section>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":11,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-75429","page","type-page","status-publish","hentry","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Maladies 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-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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