{"id":19985,"date":"2023-05-02T04:17:43","date_gmt":"2023-05-02T02:17:43","guid":{"rendered":"https:\/\/d36deud6t4mnhi.cloudfront.net\/patients\/together-for-rare-disease\/"},"modified":"2025-02-10T12:07:38","modified_gmt":"2025-02-10T10:07:38","slug":"ensemble-contre-les-maladies-rares","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/fr\/patients\/ensemble-contre-les-maladies-rares\/","title":{"rendered":"Ensemble contre les maladies rares"},"content":{"rendered":"    <section class=\"sub-page-banner bg-img\" style=\"background-image:url(https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/09\/04140458\/Together-for-Rare-Disease_Savannah_Banner_1920x280pix.png)\">\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\/patients\/\">Patients<\/a><\/li><li class=\"breadcrumb-item active\"><a class=\"link-pointer-events-none\" href=\"#\" aria-current=\"page\">Ensemble contre les maladies rares<\/a><\/li><\/ol>\n            <\/nav>            <h1 class=\"visible\">Ensemble contre les maladies rares<\/h1>\n            <p class=\"visible\">Nous mettons \u00e0 profit la science pour faire une r\u00e9elle diff\u00e9rence dans la vie des personnes atteintes de maladies rares.<\/p>\n        <\/div>\n    <\/section>\n\n\n\n<div class=\"wp-block-columns alignfull is-layout-flex wp-container-core-columns-is-layout-1 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:75%\"><!-- 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\/09\/04140454\/Bringing-science-to-life-for-people-with-rare-diseases_Savannah_card-700x420pix.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                            Donner vie \u00e0 la science pour les personnes atteintes de maladies rares                        <\/p>\n                        <p>Nous collaborons avec la communaut\u00e9 de patients atteints de maladies rares pour recueillir des preuves et des donn\u00e9es sur leur qualit\u00e9 de vie qui garantissent que nos d\u00e9couvertes scientifiques, nos \u00e9tudes cliniques et nos solutions d&rsquo;accompagnement r\u00e9pondent pr\u00e9cis\u00e9ment \u00e0 leurs besoins.<\/p>\n<p>Nous avons notamment collabor\u00e9 avec l&rsquo;International Fibrodysplasia Ossificans Progressiva Association (IFOPA) et 14 associations nationales de patients atteints de fibrodysplasie ossifiante progressive (FOP) pour co-\u00e9laborer la toute premi\u00e8re enqu\u00eate \u00e9valuant l&rsquo;impact r\u00e9el de la FOP sur les patients et les membres de leur famille.<\/p>\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\t<!-- Ipsen Quotes Start -->\n\t<section class=\"quotes-section \">\n\t\t<div class=\"container\">\n\t\t\t\t\t\t<div class=\"quote-sec-inner\" style=\"background-image: url(https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/04\/19085624\/Group-252.png);background-color: #DBEAF5;\">\n\t\t\t\t\t<div class=\"row\">\n\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"column-1 col-xl-4 col-md-6 col-xs-12 \">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"quote-img\">\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/05\/14085629\/Template_Quote-Alexander-Artyomenko_446x360pix.png\" alt=\"\" title=\"\" >\n\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"column-2 col-xl-8 col-md-6 col-xs-12 \">\n\t\t\t\t\t\t\t\t<div class=\"quote-content\">\n\t\t\t\t\t\t\t\t\t<div class=\"quote-para \">\n\t\t\t\t\t\t\t\t\t\t<p class=\"para charcoal-grey \">\n\t\t\t\t\t\t\t\t\t\t\t<p>Au-del\u00e0 de la difficult\u00e9 de diagnostiquer et de traiter les maladies rares, l&rsquo;impact d\u00e9vastateur que ces maladies peuvent avoir sur le quotidien des patients est encore m\u00e9connu. Nous collaborons avec les communaut\u00e9s de patients atteints de maladies rares pour recueillir et partager leurs exp\u00e9riences de vie afin d&rsquo;aider les professionnels de sant\u00e9 et la soci\u00e9t\u00e9 au sens large \u00e0 mieux comprendre les besoins des personnes vivant avec des maladies rares et ainsi am\u00e9liorer leur prise en charge.<\/p>\n\t\t\t\t\t\t\t\t\t\t<\/p>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<div class=\"quote-sign-div\">\n\t\t\t\t\t\t\t\t\t\t<div class=\"quote-author-div\">\n\t\t\t\t\t\t\t\t\t\t\t<div class=\"quote-dash-div\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"quote-dash\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<p class=\"quote-author primary-blue\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tAlexander Artyomenko\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/p>\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<p class=\"quote-author-role charcoal-grey \">\n\t\t\t\t\t\t\t\t\t\t\t\t\tDirecteur Affaires Patients Monde, Maladies Rares\t\t\t\t\t\t\t\t\t\t\t\t<\/p> \n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t<\/div>\n<\/section>\n<!-- Ipsen Quotes End -->\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 visible\">Notre travail en collaboration avec la communaut\u00e9 de patients atteints de maladies rares<\/h3>\n                            <p class=\"text-graph-para charcoal-grey visible\">Nous collaborons avec la communaut\u00e9 de patients atteints de maladies rares dans le monde entier sur une vari\u00e9t\u00e9 de projets \u00e0 toutes les \u00e9tapes de la recherche et du d\u00e9veloppement, des informations sur les \u00e9tudes cliniques aux programmes d&rsquo;accompagnement des patients.<\/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>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Comprendre la personne derri\u00e8re les donn\u00e9es \u2013 Vivre avec une cholangite biliaire primitive (CBP)<\/h3>\n                                                            <\/div>\n                                                            <div class=\"text-graph-desc\">\n                                                                <p><p>Nous avons collabor\u00e9 avec PBCers aux \u00c9tats-Unis, la Soci\u00e9t\u00e9 canadienne de la CBP et la PBC Foundation au Royaume-Uni pour co-organiser un symposium au Congr\u00e8s de l&rsquo;American Association for the Study of Liver Diseases (ASSLD), intitul\u00e9 \u00ab\u00a0Vivre avec la CBP : la personne derri\u00e8re les donn\u00e9es\u00a0\u00bb. Ce symposium visait \u00e0 sensibiliser les professionnels de sant\u00e9 sur les besoins uniques des personnes vivant avec la CBP, en soulignant l&rsquo;importance de regarder \u00ab au-del\u00e0 des donn\u00e9es \u00bb pour mieux comprendre les besoins de ces patients et adapter leur prise en charge.<\/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>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP<\/h3>\n                                                            <\/div>\n                                                            <div class=\"text-graph-desc\">\n                                                                <p><p>Nous avons travaill\u00e9 sur la toute premi\u00e8re exp\u00e9rience immersive de la fibrodysplasie ossifiante progressive (FOP), permettant aux participants de vivre certains des d\u00e9fis physiques et \u00e9motionnels auxquels les personnes atteintes de cette maladie sont confront\u00e9es quotidiennement.<\/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>\n                                                    <div class=\"column-2\">\n                                                        <div class=\"text-graph-content\">\n                                                            <div class=\"text-graph-title\">\n                                                                <h3>Cartographier les \u00e9clairages pr\u00e9cieux de la communaut\u00e9 de patients FOP au Royaume-Uni et en Espagne <\/h3>\n                                                            <\/div>\n                                                            <div class=\"text-graph-desc\">\n                                                                <p><p>Nous avons collabor\u00e9 avec plusieurs associations de patients atteints de FOP au Royaume-Uni et en Espagne pour g\u00e9n\u00e9rer des id\u00e9es concr\u00e8tes sur la base des \u00e9clairages apport\u00e9s par les patients.<\/p>\n<\/p>\n                                                            <\/div>\n                                                        <\/div>\n                                                    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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\/19094713\/Image6.png\" alt=\"PARTENARIATS\" title=\"PARTENARIATS\">\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                                <p class=\"heading-para\">\n                                    PARTENARIATS                                <\/p>\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                                                    <\/p>\n                        <p>Ipsen collabore avec de nombreuses communaut\u00e9s mondiales et europ\u00e9ennes soutenant les personnes atteintes de maladies rares.<\/p>\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<h2 class=\"wp-block-heading\">T\u00e9moignages d&rsquo;associations de patients<\/h2>\n\n\n\n\t<section class=\"quotes-section mt-5 mb-5\">\n\t  <div class=\"container\">\n\t\t<div class=\"quotes-rectangle-inner\" style=\"background-color: #DBEAF5;\" >\n\t\t\t\t\t\t\t  <div class=\"quotes-rectangle-content\">\n\t\t\t<div class=\"rectangle-para\">\n\t\t\t  <p>\n\t\t\t  <p>L\u2019implication des patients a \u00e9t\u00e9 et continue d\u2019\u00eatre au c\u0153ur des activit\u00e9s d\u2019Ipsen et, au sein de WAPO, nous sommes tr\u00e8s reconnaissants de la synergie constante que nous pouvons offrir aussi bien \u00e0 l\u2019industrie qu\u2019\u00e0 la communaut\u00e9 internationale des patients vivant avec des troubles hypophysaires.<\/p>\n\t\t\t  <\/p>\n\t\t\t<\/div>\n\t\t\t<div class=\"quote-sign-div rectangle-sign\">\n\t\t\t  <div class=\"quote-author-div\">\n\t\t\t\t  \t\t\t\t\t<div class=\"quote-dash-div\">\n\t\t\t\t\t<span class=\"quote-dash\"><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"#\" target=\"\">\n\t\t\t\t\t\t\t\t\t<p class=\"quote-author primary-blue\">\n\t\t\t\t\t\t\t\t\t\tWorld Alliance of Pituitary Organizations (WAPO)\t\t\t\t\t\t\t\t\t<\/p>\n\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t  \t\t\t\t  \t\t\t  <\/div>\n\t\t\t<\/div>\n\t\t  <\/div>\n\n\t\t<\/div>\n\t  <\/div>\n\t<\/section>\n\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h2 class=\"video-card-block-title visible\">Vivre avec une maladie rare : l\u2019exp\u00e9rience des patients<\/h2>\n                <p class=\"charcoal-grey video-card-block-summary visible\"> <p>Vivre avec une maladie rare peut par moment \u00eatre assez d\u00e9moralisant, mais vous devez savoir que vous n&rsquo;\u00eates certainement pas seul(e). Derri\u00e8re chaque personne, il y a une histoire et nous pensons que vous \u00eates les mieux plac\u00e9s pour en parler.<\/p>\n<\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"Liu-Gang-For-A-Chance_video_VOST_FR-none\" src=\"https:\/\/player.vimeo.com\/video\/827653073?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner \">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row \">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/05\/09125716\/Module-7-%E2%80%93-Franchise_Collaborate-with-us_IPSEN-JLutt-51571.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                            Collaborez avec nous                        <\/p>\n                        <p>Nous cherchons constamment de nouvelles opportunit\u00e9s de collaborer avec les patients et les associations de patients dans le but d&rsquo;am\u00e9liorer le quotidien des personnes atteintes de maladies rares. Pour savoir comment vous pouvez collaborer avec nous sur un projet commun<\/p>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link section-btn cta-visible\"\n                                href=\"https:\/\/www.ipsen.com\/fr\/patients\/collaborez-avec-nous\/\" \n                                target=\"_self\"\n                            > \n                                En savoir plus \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n\n\n\n<h2 class=\"wp-block-heading\"><\/h2>\n\n\n\n<!--Regular card with carousel -->\n  <section class=\"p-slider blue-bg\" >\n      <div class=\"slider-heading-container\">\n          <h2 class=\"slider-title visible\">Derni\u00e8res actualit\u00e9s en maladies rares <\/h2>\n          <p class=\"charcoal-grey visible\"><\/p>\n      <\/div>\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-featured story listing -->\n                        <div class=\"product-box\" data-id=\"27819\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/a-life-in-a-day-le-quotidien-des-patients-atteints-de-fop\/\" title=\"\u00ab A Life in a Day \u00bb : le quotidien des patients atteints de FOP\" aria-label=\"\u00ab A Life in a Day \u00bb : le quotidien des patients atteints de FOP\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2022\/09\/05101525\/Abbie-and-family.jpg\" alt=\"\u00ab A Life in a Day \u00bb : le quotidien des patients atteints de FOP\" title=\"\u00ab A Life in a Day \u00bb : le quotidien des patients atteints de FOP\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">05 septembre 2022<\/span>\n                            <span class=\"time-stamp visible\">6 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"\u00ab A Life in a Day \u00bb : le quotidien des patients atteints de FOP\" aria-label=\"\u00ab A Life in a Day \u00bb : le quotidien des patients atteints de FOP\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/a-life-in-a-day-le-quotidien-des-patients-atteints-de-fop\/\">\n                                    <p class=\"text-div-para\">\u00ab A Life in a Day \u00bb : le quotidien des patients atteints de FOP<\/p>\n                                <\/a>\n                                <p>J\u2019ai \u00e9t\u00e9 honor\u00e9e d\u2019\u00eatre invit\u00e9e \u00e0 relever le d\u00e9fi de vivre durant une journ\u00e9e le quotidien d\u2019un patient atteint de FOP (\u00ab&nbsp;A Life in a&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"36418\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/comprendre-le-patient-au-dela-des-chiffres-vivre-avec-une-cholangite-biliaire-primitive\/\" title=\"Comprendre le patient au-del\u00e0 des chiffres \u2013 Vivre avec une cholangite biliaire primitive\" aria-label=\"Comprendre le patient au-del\u00e0 des chiffres \u2013 Vivre avec une cholangite biliaire primitive\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/08\/05102610\/PBC-1.png\" alt=\"Comprendre le patient au-del\u00e0 des chiffres \u2013 Vivre avec une cholangite biliaire primitive\" title=\"Comprendre le patient au-del\u00e0 des chiffres \u2013 Vivre avec une cholangite biliaire primitive\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">29 ao\u00fbt 2023<\/span>\n                            <span class=\"time-stamp visible\">2 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Comprendre le patient au-del\u00e0 des chiffres \u2013 Vivre avec une cholangite biliaire primitive\" aria-label=\"Comprendre le patient au-del\u00e0 des chiffres \u2013 Vivre avec une cholangite biliaire primitive\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/comprendre-le-patient-au-dela-des-chiffres-vivre-avec-une-cholangite-biliaire-primitive\/\">\n                                    <p class=\"text-div-para\">Comprendre le patient au-del\u00e0 des chiffres \u2013 Vivre avec une cholangite biliaire primitive<\/p>\n                                <\/a>\n                                <p>La cholangite biliaire primitive (CBP) est une maladie auto-immune chronique qui affecte la fonction h\u00e9patique et peut avoir des sympt\u00f4mes invalidants pour les personnes qui&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"27801\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/vie-ma-vie-avec-ma-fop-de-lempathie-a-la-comprehension\/\" title=\"Vie ma Vie avec ma FOP : de l\u2019empathie \u00e0 la compr\u00e9hension\" aria-label=\"Vie ma Vie avec ma FOP : de l\u2019empathie \u00e0 la compr\u00e9hension\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2022\/11\/05100048\/Image-1024x768-1.jpeg\" alt=\"Vie ma Vie avec ma FOP : de l\u2019empathie \u00e0 la compr\u00e9hension\" title=\"Vie ma Vie avec ma FOP : de l\u2019empathie \u00e0 la compr\u00e9hension\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">03 novembre 2022<\/span>\n                            <span class=\"time-stamp visible\">5 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Vie ma Vie avec ma FOP : de l\u2019empathie \u00e0 la compr\u00e9hension\" aria-label=\"Vie ma Vie avec ma FOP : de l\u2019empathie \u00e0 la compr\u00e9hension\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/vie-ma-vie-avec-ma-fop-de-lempathie-a-la-comprehension\/\">\n                                    <p class=\"text-div-para\">Vie ma Vie avec ma FOP : de l\u2019empathie \u00e0 la compr\u00e9hension<\/p>\n                                <\/a>\n                                <p>Vous ne pouvez jamais vraiment comprendre ce que c\u2019est que de vivre avec une maladie ultra-rare \u00e0 moins de l\u2019avoir v\u00e9cue par vous-m\u00eame. Et dans&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"36425\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/se-mettre-dans-la-peau-dune-personne-atteinte-dune-maladie-ultra-rare-premiere-experience-immersive-de-la-fop\/\" title=\"Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP\" aria-label=\"Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/08\/29124942\/Image7.png\" alt=\"Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP\" title=\"Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">29 ao\u00fbt 2023<\/span>\n                            <span class=\"time-stamp visible\">2 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP\" aria-label=\"Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/se-mettre-dans-la-peau-dune-personne-atteinte-dune-maladie-ultra-rare-premiere-experience-immersive-de-la-fop\/\">\n                                    <p class=\"text-div-para\">Se mettre dans la peau d&rsquo;une personne atteinte d&rsquo;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP<\/p>\n                                <\/a>\n                                <p>Vous ne pouvez jamais vraiment comprendre ce que c&rsquo;est que de vivre avec une maladie ultra-rare \u00e0 moins de l&rsquo;avoir v\u00e9cue par vous-m\u00eame. Et dans&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"27826\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/ilc-2022-parlons-de-la-pbc\/\" title=\"ILC 2022 : parlons de la CBP\" aria-label=\"ILC 2022 : parlons de la CBP\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2022\/08\/05101954\/Gideon-Headshot-683x1024-1.jpg\" alt=\"ILC 2022 : parlons de la CBP\" title=\"ILC 2022 : parlons de la CBP\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">05 ao\u00fbt 2022<\/span>\n                            <span class=\"time-stamp visible\">4 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"ILC 2022 : parlons de la CBP\" aria-label=\"ILC 2022 : parlons de la CBP\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/ilc-2022-parlons-de-la-pbc\/\">\n                                    <p class=\"text-div-para\">ILC 2022 : parlons de la CBP<\/p>\n                                <\/a>\n                                <p>L\u2019International Liver Congress (ILC)1 est un \u00e9v\u00e9nement cl\u00e9 \u00e0 l\u2019occasion duquel les professionnels se r\u00e9unissent pour discuter de la prise en charge des pathologies du&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"27797\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/vivre-avec-une-cholangite-biliaire-primitive-comprendre-le-patient-au-dela-des-chiffres\/\" title=\"Vivre avec une cholangite biliaire primitive\u00a0: comprendre le patient au-del\u00e0 des chiffres\" aria-label=\"Vivre avec une cholangite biliaire primitive\u00a0: comprendre le patient au-del\u00e0 des chiffres\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2022\/12\/05095833\/R-Mitchell.png\" alt=\"Vivre avec une cholangite biliaire primitive\u00a0: comprendre le patient au-del\u00e0 des chiffres\" title=\"Vivre avec une cholangite biliaire primitive\u00a0: comprendre le patient au-del\u00e0 des chiffres\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">20 d\u00e9cembre 2022<\/span>\n                            <span class=\"time-stamp visible\">1 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Vivre avec une cholangite biliaire primitive\u00a0: comprendre le patient au-del\u00e0 des chiffres\" aria-label=\"Vivre avec une cholangite biliaire primitive\u00a0: comprendre le patient au-del\u00e0 des chiffres\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/vivre-avec-une-cholangite-biliaire-primitive-comprendre-le-patient-au-dela-des-chiffres\/\">\n                                    <p class=\"text-div-para\">Vivre avec une cholangite biliaire primitive\u00a0: comprendre le patient au-del\u00e0 des chiffres<\/p>\n                                <\/a>\n                                <p>Les maladies \u00ab&nbsp;invisibles&nbsp;\u00bb comme la cholangite biliaire primitive (PBC) peuvent \u00eatre difficiles \u00e0 reconna\u00eetre, \u00e0 diagnostiquer et \u00e0 g\u00e9rer efficacement. Le professeur Gideon Hirschfield (Universit\u00e9&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"26544\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/understanding-the-true-impact-of-living-with-fop\/\" title=\"Comprendre le v\u00e9ritable impact de la vie avec la FOP\" aria-label=\"Comprendre le v\u00e9ritable impact de la vie avec la FOP\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/09\/04140505\/Learning-the-impacts-of-FOP_Savannah_Card-1082x620_2.png\" alt=\"Comprendre le v\u00e9ritable impact de la vie avec la FOP\" title=\"Comprendre le v\u00e9ritable impact de la vie avec la FOP\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">12 mai 2023<\/span>\n                            <span class=\"time-stamp visible\">5 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Comprendre le v\u00e9ritable impact de la vie avec la FOP\" aria-label=\"Comprendre le v\u00e9ritable impact de la vie avec la FOP\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/understanding-the-true-impact-of-living-with-fop\/\">\n                                    <p class=\"text-div-para\">Comprendre le v\u00e9ritable impact de la vie avec la FOP<\/p>\n                                <\/a>\n                                <p>Cette ann\u00e9e marque le 17e&nbsp;anniversaire de l\u2019annonce de la d\u00e9couverte du g\u00e8ne&nbsp;ACVR1, une \u00e9tape scientifique majeure dans la recherche sur la fibrodysplasie ossifiante progressive (FOP)&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"36413\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/mieux-comprendre-les-impacts-de-la-fop-aupres-des-patients-et-de-leurs-familles-etude-the-burden-of-illness\/\" title=\"Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness\" aria-label=\"Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/09\/04140502\/Learning-the-impacts-of-FOP_Savannah_Card-1082x620_1.png\" alt=\"Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness\" title=\"Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness\" >\n                                                                      <\/a>\n                                <\/div>\n                          <\/div>\n                          <!-- text-container -->\n                          <div class=\"p-box-text\">\n                                                            <button class=\"btn-link card-btn visible\" style=\"background-color:#224a81;\" tabindex=\"-1\">\n                                  Maladies Rares                                <\/button>\n                                                        <span class=\"time-stamp visible\">29 ao\u00fbt 2023<\/span>\n                            <span class=\"time-stamp visible\">3 \u00a0mn de lecture<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness\" aria-label=\"Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness\" href=\"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/mieux-comprendre-les-impacts-de-la-fop-aupres-des-patients-et-de-leurs-familles-etude-the-burden-of-illness\/\">\n                                    <p class=\"text-div-para\">Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness<\/p>\n                                <\/a>\n                                <p>La fibrodysplasie ossifiante progressive (FOP) est une maladie g\u00e9n\u00e9tique ultra-rare caract\u00e9ris\u00e9e par une formation osseuse extra-squelettique dans les tissus mous, notamment les muscles, les tendons&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                          <\/div>\n          <\/div>\n\n     \n      <div class=\"cta-block hidden\">\n                <\/div>\n  <\/section>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:25%\">    <section class=\"side-panel quick-links\">\n        <div class=\"container\">\n            <div class=\"quick-link-inner\">\n                <div class=\"quick-link-head visible\">\n                    <p class=\"quicklink-block-title\">Publications avec les patients<\/p>\n                <\/div>\n                <div class=\"quick-link-list\">\n                    <ul style=\"border: 1px solid #C4C9CB\">\n                                                        <li>\n                                   <a href=\"https:\/\/www.focusonfop.com\/\" target=\"_blank\">\n                                        Focus sur la FOP                                                &nbsp;&nbsp;<span class=\"target-blank\"> <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/forward.png\" alt=\"Focus sur la FOP\" title=\"Focus sur la FOP\" ><\/span>\n                                                                            <\/a>\n                                <\/li>\n                                                            <li>\n                                   <a href=\"https:\/\/www.acromunity.com\/en-us\/\" target=\"_blank\">\n                                        Acromunity                                                 &nbsp;&nbsp;<span class=\"target-blank\"> <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/forward.png\" alt=\"Acromunity \" title=\"Acromunity \" ><\/span>\n                                                                            <\/a>\n                                <\/li>\n                                         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m\u00e9dicales sur les produits d&rsquo;Ipsen, signaler un \u00e9v\u00e9nement ind\u00e9sirable ou d\u00e9poser une plainte, veuillez consulter le site : <a href=\"https:\/\/www.ipsenmedicalinformation.com\/fr\/\" target=\"_blank\" rel=\"noopener\"><strong>Ipsen Medical Information<\/strong><\/a> ou nous \u00e9crire \u00e0 <b><a href=\"mailto:globalmedinfo@ipsen.com\">globalmedinfo@ipsen.com<\/a>.<\/b><\/p>\n<p>Les effets ind\u00e9sirables peuvent \u00e9galement \u00eatre signal\u00e9s directement \u00e0 l&rsquo;\u00e9quipe locale de s\u00e9curit\u00e9 d&rsquo;Ipsen en utilisant les coordonn\u00e9es fournies dans <strong><a href=\"https:\/\/www.ipsen.com\/fr\/contacts\/\">la liste \u00e0 retrouver ici<\/a>.<\/strong><\/p>\n<\/div>\n          <\/div>\n        <\/div>\n        <!--Alert Box HTML Start Here-->\n      <\/div>\n    <\/section>\n<!--Alert Card Layout End 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