{"id":117,"date":"2023-12-22T06:58:31","date_gmt":"2023-12-22T04:58:31","guid":{"rendered":"https:\/\/www.ipsen.com\/be\/?page_id=117"},"modified":"2024-08-27T17:48:58","modified_gmt":"2024-08-27T15:48:58","slug":"ensemble-contre-les-maladies-rares","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/be\/fr\/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\/sites\/7\/2024\/02\/27195703\/Together-for-Rare-Disease_Savannah_Banner_1920x280px.jpg)\">\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\/be\/fr\/\">Accueil<\/a><\/li><li class=\"breadcrumb-item active\"><a href=\"#\" aria-current=\"page\">Patients &#8211; 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-9d6595d7 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\/sites\/7\/2024\/08\/27174735\/Image21.jpg\" alt=\"Media Image\" title=\"Media Image\">\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            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-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\/sites\/7\/2024\/02\/27195747\/Module-3-Quote_Alex-Artymenko_450X350-px.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\t\t<a href=\"#!\" target=\"\">\n\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\t\t\t\tAlexander Artyomen\t\t\t\t\t\t\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<\/a>\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<\/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\tRare Disease Global Patient Affairs Director\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\">Ons werk met de pati\u00ebntengemeenschap voor zeldzame ziekten<\/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                                                    <\/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\/sites\/7\/2024\/02\/27200053\/Image_700X420px.jpg\" 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\/sites\/7\/2024\/02\/27194426\/Module-7-Franchise_Collaborate-with-us_IPSEN-JLutt-700X420-px.jpg\" alt=\"Media Image\" title=\"Media Image\">\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            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=\"_blank\"\n                            > \n                                En savoir plus \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\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\/be\/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.wapo.org\/\" target=\"_blank\">\n                                        Acromunity                                                &nbsp;&nbsp;<span class=\"target-blank\"> <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/be\/wp-content\/themes\/ipsen-main\/dist\/images\/forward.png\" alt=\"Acromunity\" title=\"Acromunity\" ><\/span>\n                                                                            <\/a>\n                                <\/li>\n                                                <\/ul>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/section>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-117","page","type-page","status-publish","hentry","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - 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