{"id":69,"date":"2024-11-27T07:41:35","date_gmt":"2024-11-27T05:41:35","guid":{"rendered":"https:\/\/www.ipsen.com\/middleeast\/?page_id=69"},"modified":"2025-10-23T13:48:09","modified_gmt":"2025-10-23T11:48:09","slug":"together-for-rare-disease","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/uae-gulf\/patients\/together-for-rare-disease\/","title":{"rendered":"Together for Rare Disease"},"content":{"rendered":"    <section class=\"sub-page-banner bg-img\" style=\"background-image:url(https:\/\/www.ipsen.com\/uae-gulf\/wp-content\/uploads\/sites\/18\/2025\/10\/Patients-Together-for-Rare-Disease.jpg)\">\n        <div class=\"container content-sec\">\n            <nav aria-label=\"breadcrumb\">\n            <ol class=\"breadcrumb\">\n                <li class=\"breadcrumb-item\"><a href=\"https:\/\/www.ipsen.com\/uae-gulf\">Home<\/a><\/li><li class=\"breadcrumb-item visible\"><a href=\"https:\/\/www.ipsen.com\/uae-gulf\/patients\/\">Patients<\/a><\/li><li class=\"breadcrumb-item active\"><a class=\"link-pointer-events-none\" href=\"#\" aria-current=\"page\">Together for Rare Disease<\/a><\/li><\/ol>\n            <\/nav>            <h1 class=\"visible\">Together for Rare Disease<\/h1>\n            <p class=\"visible\">We transform our science to make a meaningful difference to the lives of people living with rare diseases.<\/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\" \n                                    src=\"https:\/\/www.ipsen.com\/uae-gulf\/wp-content\/uploads\/sites\/18\/2025\/10\/Bringing-science-to-life-for-people-with-rare-diseases_Savannah_card-700x420pix.jpg\" \n                                    alt=\"\" \n                                >\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                                                    <h4 class=\"section-head-two heading-four\" role=\"heading\" aria-level=\"3\">\n                                    Bringing science to life for people with rare diseases                                <\/h4>\n                                                <p>We collaborate with the rare disease patient community to gather evidence and quality-of-life data that ensures our scientific discoveries, clinical studies and support solutions accurately address their needs.<\/p>\n<p>One example of this is our collaboration with the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) and 14 national fibrodysplasia ossificans progressiva (FOP) patient organizations to co-create the first ever survey investigating the true impact of FOP on individuals and family members.<\/p>\n                            <a \n                            aria-label=\" about \"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n<!--Graphics Cards Carousel Start Here-->\n\n    <section class=\"graphic-card graphics-new-layout bg-color-disabled bg-image-disabled bg-video-disabled bg-mobile-video-img-disabled\"    data-displaycards=\"2\">\n                <div class=\"container\">\n            <div class=\"text-graph-inner\">\n                <div class=\"row\">\n                    <!--Graphic info section-->\n                    <div class=\"column-1 col-xl-12 col-md-12 col-sm-12\">\n                        <div class=\"text-graph-heading\">\n                        <h3 class=\"charcoal-grey visible heading-three\" role=\"heading\" aria-level=\"2\">\n                                Our work with the rare disease patient community                            <\/h3>\n                            <p class=\"text-graph-para charcoal-grey visible\">We work together with the rare disease patient community around the world on a range of different projects, across all stages from research and development, clinical study information, and patient support programs.<\/p>\n                        <\/div>\n                    <\/div><!--Graphic info section over here -->\n\n                    <!--Graphic detail section-->\n                    <div class=\"column-2 col-xl-12 col-md-12 col-sm-12\">\n                        <!-- graphic-card carousel start here -->\n                                                    <div class=\"text-graph-carousel\">\n                                <div class=\"glider-contain multiple\">\n                                                                                    <div class=\"text-graph-content-btn\">\n                                                    <button aria-hidden=\"true\" aria-label=\"Previous\" class=\"glider-graphic-card-prev\"><span><\/span><\/button>\n                                                    <button aria-hidden=\"true\" aria-label=\"Next\" class=\"glider-graphic-card-next\"><span><\/span><\/button>\n                                                <\/div>\n                                    \n                                <div class=\"glider-graphic-card\" tabindex=\"-1\">\n                                                                                                                        <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                                                                                       <!-- Graphic Card With NEW layout start here -->\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"left-text-graph-content\">\n                                                                        <div class=\"left-text-graph-title\">\n                                                                        <h5 role=\"heading\" aria-level=\"3\">Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis (PBC)<\/h5>\n                                                                        <\/div>\n                                                                                                                                                    <div class=\"left-text-graph-desc\">\n                                                                                <p><p>We collaborated with PBCers in the USA, the Canadian PBC foundation, and the UK PBC foundation, on a co-created symposium at the American Association for the Study of Liver Diseases (AASLD), entitled \u2018Living with PBC: The Person Behind the Chart\u2019. The symposium raised awareness of the unique needs of people living with PBC among healthcare professionals, emphasizing the importance of looking \u2018beyond the chart\u2019 to understand the needs of people living with PBC and to adapt their care accordingly.<\/p>\n<\/p>\n                                                                            <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With NEW layout end here -->\n                                                        \n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                    <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                                                                                       <!-- Graphic Card With NEW layout start here -->\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"left-text-graph-content\">\n                                                                        <div class=\"left-text-graph-title\">\n                                                                        <h5 role=\"heading\" aria-level=\"3\">Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience<\/h5>\n                                                                        <\/div>\n                                                                                                                                                    <div class=\"left-text-graph-desc\">\n                                                                                <p><p>We worked on the first ever fibrodysplasia ossificans progressive (FOP) immersive experience, bringing to life the physical and emotional challenges that people living with the condition face every day.<\/p>\n<\/p>\n                                                                            <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With NEW layout end here -->\n                                                        \n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                    <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                                                                                       <!-- Graphic Card With NEW layout start here -->\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"left-text-graph-content\">\n                                                                        <div class=\"left-text-graph-title\">\n                                                                        <h5 role=\"heading\" aria-level=\"3\">Mapping valuable insights from the FOP patient community in the UK and Spain <\/h5>\n                                                                        <\/div>\n                                                                                                                                                    <div class=\"left-text-graph-desc\">\n                                                                                <p><p>We collaborated with FOP patient organizations in the UK and Spain to turn insights from the FOP patient community into actionable ideas.<\/p>\n<\/p>\n                                                                            <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With NEW layout end here -->\n                                                        \n                                                    <\/div>\n                                                <\/div>\n                                                                                                                <\/div>\n                            <\/div>\n                                            <\/div> <!-- graphic-card carousel end here -->\n                <\/div> <!--Graphic detail section over here with 12 grid -->   \n            <\/div><!--row ended here-->\n        <\/div> <!-- graph-inner ended here -->\n        \n            <div class=\"more-result-btn\">\n                                            <\/div>\n        <\/div> <!--Container class ended here -->\n    <\/section>\n<!--Graphics Cards Carousel End Here-->\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner \">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row \">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" \n                                    src=\"https:\/\/www.ipsen.com\/uae-gulf\/wp-content\/uploads\/sites\/18\/2025\/10\/Module-7-\u2013-People_Generation-Ipsen-People-2.jpg\" \n                                    alt=\"\" \n                                >\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                            <span class=\"dash\"><\/span>\n                                <h4 class=\"heading-para heading-four\" role=\"heading\" aria-level=\"2\">\n                                    Partnerships                                <\/h4>\n                                                    <\/div>\n                                                <p>Ipsen has worked together with many Global and European communities, supporting people affected by rare diseases.<\/p>\n                            <a \n                            aria-label=\" about Partnerships\"  \n                                role=\"link\" \n                                class=\"btn-link hidden\"\n                                href=\"\" \n                                target=\"_self\"\n                            > \n                                 \n                            <\/a>\n\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n<div class=\"wp-block-group\"><div class=\"wp-block-group__inner-container is-layout-constrained wp-block-group-is-layout-constrained\">\n<h3 class=\"wp-block-heading\">Testimonial from a Patient Organization<\/h3>\n<\/div><\/div>\n\n\n\n\t<section class=\"quotes-section\" tabindex=\"0\" aria-label=\"quotes-section\">\n\t  <div class=\"container\">\n\t\t<div class=\"quotes-rectangle-inner\">\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>Patient Engagement has been and continues to be at the core of Ipsen\u2019s activities and we at WAPO are very appreciative of the continuous synergy we can offer to both industry and the global pituitary patient community.<\/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=\"\" tabindex=\"-1\" role=\"presentation\">\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                <h3 class=\"video-card-block-title visible heading-three\">\n                    Experiences of living with rare diseases                <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary visible\"> \n                    <p>Although living with a rare disease might feel daunting at times, you are certainly not alone. Behind every person, there is a story, and we believe that you tell it best.<\/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_EN-none\" src=\"https:\/\/player.vimeo.com\/video\/827608010?h=4f49c93a59&amp;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; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" 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\" \n                                    src=\"https:\/\/www.ipsen.com\/uae-gulf\/wp-content\/uploads\/sites\/18\/2025\/10\/Module-7-\u2013-Franchise_Collaborate-with-us_IPSEN-JLutt-51571.jpg\" \n                                    alt=\"\" \n                                >\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                            <span class=\"dash\"><\/span>\n                                <h4 class=\"heading-para heading-four\" role=\"heading\" aria-level=\"2\">\n                                    Collaborate with us                                <\/h4>\n                                                    <\/div>\n                                                <p>We are always looking to collaborate with patients and patient organizations to improve the lives of people living with rare diseases. Find out how you can work with us on a potential shared project.<\/p>\n                            <a \n                            aria-label=\"Learn more about Collaborate with us\"  \n                                role=\"link\" \n                                class=\"btn-link section-btn cta-visible\"\n                                href=\"https:\/\/www.ipsen.com\/uae-gulf\/patients\/collaborate-with-us\/\" \n                                target=\"_self\"\n                            > \n                                Learn more \n                            <\/a>\n\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section><\/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                    <h6 class=\"quicklink-block-title heading-six\">\n                        Publications with Patients                    <\/h6>\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                                        <span class=\"quick-link-text\">Focus on FOP<\/span>\n                                                &nbsp;&nbsp;<span class=\"target-blank\"> <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/uae-gulf\/wp-content\/themes\/ipsen-main\/dist\/images\/forward.png\" alt=\"Focus on FOP Open in new tab\"><\/span>\n                                                                            <\/a>\n                                <\/li>\n                                                            <li>\n                                   <a href=\"https:\/\/www.acromunity.com\/en-us\/\" target=\"_blank\">\n                                        <span class=\"quick-link-text\">Acromunity <\/span>\n                                                &nbsp;&nbsp;<span class=\"target-blank\"> <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/uae-gulf\/wp-content\/themes\/ipsen-main\/dist\/images\/forward.png\" alt=\"Acromunity  Open in new tab\"><\/span>\n                                                                            <\/a>\n                                <\/li>\n                                                <\/ul>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/section>\n<\/div>\n<\/div>\n\n\n\n<!--Alert Card Layout Start Here-->\n<section class=\"alertcard-section\">\n      <div class=\"container\">\n        <!--Alert Box HTML Start Here-->\n        <div class=\"alert-box general-box\">\n                    <div class=\"info-icon\">\n              <span class=\"info-circle\"><img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/uae-gulf\/wp-content\/themes\/ipsen-main\/dist\/images\/alert-info-icon.png\" alt=\"Alert\"\/><\/i>\n            <\/div>\n                    <div class=\"info-contents\">\n          <h4 role=\"heading\" aria-level=\"2\" class=\"info-head heading-four heading-four\">Request medical information \/ report adverse event or product complaint<\/h4>\n            <p class=\"info-sub-head-para visible heading-para\"><\/p>\n            <div class=\"alert-content visible\"><p>To request medical information on Ipsen\u2019s products, report an adverse event or report a complaint, please visit: <a href=\"https:\/\/www.ipsenmedicalinformation.com\/\" target=\"_blank\" rel=\"noopener\"><strong>Ipsen Medical Information<\/strong><\/a> or email us at <a href=\"mailto:globalmedinfo@ipsen.com\"><b>globalmedinfo@ipsen.com<\/b><\/a><\/p>\n<p>Adverse event reactions can also be reported directly to Ipsen\u2019s local safety team using the contact details provided in the <strong><a href=\"https:\/\/www.ipsen.com\/contact-us\/\">contact us pages<\/a><\/strong><\/p>\n<\/div>\n          <\/div>\n        <\/div>\n        <!--Alert Box HTML Start Here-->\n      <\/div>\n    <\/section>\n<!--Alert Card Layout End Here-->\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":65,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-69","page","type-page","status-publish","hentry","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Together for Rare Disease - UAE &amp; 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