{"id":18045,"date":"2023-05-02T04:17:43","date_gmt":"2023-05-02T04:17:43","guid":{"rendered":"https:\/\/d36deud6t4mnhi.cloudfront.net\/?page_id=18045&#038;preview_id=18045"},"modified":"2025-01-26T14:38:40","modified_gmt":"2025-01-26T12:38:40","slug":"together-for-rare-disease","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/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\/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\">Home<\/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\">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-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                            Bringing science to life for people with rare diseases                        <\/p>\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=\"\"  \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=\"Author Image\" title=\"Author Image\" >\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>Rare diseases are often not only difficult to diagnose and treat \u2013 there is also lack of awareness of the devastating impact that such conditions can have on peoples\u2019 lives. We collaborate with rare disease communities on capturing and sharing real-life experiences, to help healthcare professionals and wider society to better understand the needs of people living with rare conditions and drive improvements in care.<\/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 Artyomenko\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\">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-label=\"Previous\" class=\"glider-graphic-card-prev\"><span><\/span><\/button>\n                                                    <button aria-label=\"Next\" 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>Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis (PBC)<\/h3>\n                                                            <\/div>\n                                                            <div class=\"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                                                <\/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>Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience<\/h3>\n                                                            <\/div>\n                                                            <div class=\"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                                                <\/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>Mapping valuable insights from the FOP patient community in the UK and Spain <\/h3>\n                                                            <\/div>\n                                                            <div class=\"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                                                <\/div>\n                                            <\/div>\n                                                                                                            <\/div>\n                            <\/div>\n                                            <\/div> <!-- graphic-card carousel end here -->\n                <\/div> <!--Graphic detail section over here with 12 grid -->   \n            <\/div><!--row ended here-->\n        <\/div> <!-- graph-inner ended here -->\n        \n            <div class=\"more-result-btn\">\n                                            <\/div>\n        <\/div> <!--Container class ended here -->\n    <\/section>\n<!--Graphics Cards Carousel End Here-->\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner \">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row \">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/05\/19094713\/Image6.png\" alt=\"PARTNERSHIPS\" title=\"PARTNERSHIPS\">\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                                    PARTNERSHIPS                                <\/p>\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                                                    <\/p>\n                        <p>Ipsen has worked together with many Global and European communities, supporting people affected by rare diseases.<\/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\">Testimonial from a Patient Organization<\/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>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=\"\">\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\">Experiences of living with rare diseases<\/h2>\n                <p class=\"charcoal-grey video-card-block-summary visible\"> <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\" 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                            Collaborate with us                        <\/p>\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\/patients\/collaborate-with-us\/\" \n                                target=\"_blank\"\n                            > \n                                Learn more \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\">Top patient stories in rare disease <\/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=\"Previous\" aria-labelledby=\"glider-product-prev\" role=\"button\" title=\"Previous\" 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=\"Next\" aria-labelledby=\"glider-product-next\" role=\"button\" title=\"Next\" 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=\"36415\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/understanding-the-person-behind-the-chart-living-with-primary-biliary-cholangitis\/\" title=\"Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis\" aria-label=\"Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/08\/05102610\/PBC-1.png\" alt=\"Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis\" title=\"Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis\" >\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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">29 August 2023<\/span>\n                            <span class=\"time-stamp visible\">2 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis\" aria-label=\"Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/understanding-the-person-behind-the-chart-living-with-primary-biliary-cholangitis\/\">\n                                    <p class=\"text-div-para\">Understanding the Person Behind the Chart \u2013 Living with Primary Biliary Cholangitis<\/p>\n                                <\/a>\n                                <p>Primary biliary cholangitis (PBC) is a chronic autoimmune disease that affects liver function and can have debilitating symptoms for people living with the condition, including&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"10611\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/a-life-in-a-day-the-realities-of-living-with-fop\/\" title=\"\u2018A Life in a Day\u2019: the realities of living with FOP\" aria-label=\"\u2018A Life in a Day\u2019: the realities of living with 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=\"\u2018A Life in a Day\u2019: the realities of living with FOP\" title=\"\u2018A Life in a Day\u2019: the realities of living with 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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">05 September 2022<\/span>\n                            <span class=\"time-stamp visible\">5 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"\u2018A Life in a Day\u2019: the realities of living with FOP\" aria-label=\"\u2018A Life in a Day\u2019: the realities of living with FOP\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/a-life-in-a-day-the-realities-of-living-with-fop\/\">\n                                    <p class=\"text-div-para\">\u2018A Life in a Day\u2019: the realities of living with FOP<\/p>\n                                <\/a>\n                                <p>I was honored to be invited to take on the challenge to live \u2018A Life in a Day of a patient with FOP\u2019 \u2013 but&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"10848\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/a-life-in-a-day-of-an-fop-person-from-empathy-to-understanding\/\" title=\"A Life in a Day with FOP: from Empathy to Understanding\" aria-label=\"A Life in a Day with FOP: from Empathy to Understanding\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2022\/11\/05100048\/Image-1024x768-1.jpeg\" alt=\"A Life in a Day with FOP: from Empathy to Understanding\" title=\"A Life in a Day with FOP: from Empathy to Understanding\" >\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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">03 November 2022<\/span>\n                            <span class=\"time-stamp visible\">4 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"A Life in a Day with FOP: from Empathy to Understanding\" aria-label=\"A Life in a Day with FOP: from Empathy to Understanding\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/a-life-in-a-day-of-an-fop-person-from-empathy-to-understanding\/\">\n                                    <p class=\"text-div-para\">A Life in a Day with FOP: from Empathy to Understanding<\/p>\n                                <\/a>\n                                <p>You can never truly understand what it\u2019s like to live with an ultra-rare condition unless you\u2019ve experienced it for yourself. And with this in mind,&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"36427\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/mapping-valuable-insights-from-the-fop-patient-community-in-the-uk-and-spain\/\" title=\"Mapping valuable insights from the FOP patient community in the UK and Spain\" aria-label=\"Mapping valuable insights from the FOP patient community in the UK and Spain\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/09\/04140507\/Learning-the-impacts-of-FOP_Savannah_Card-1082x620_3.png\" alt=\"Mapping valuable insights from the FOP patient community in the UK and Spain\" title=\"Mapping valuable insights from the FOP patient community in the UK and Spain\" >\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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">29 August 2023<\/span>\n                            <span class=\"time-stamp visible\">1 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Mapping valuable insights from the FOP patient community in the UK and Spain\" aria-label=\"Mapping valuable insights from the FOP patient community in the UK and Spain\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/mapping-valuable-insights-from-the-fop-patient-community-in-the-uk-and-spain\/\">\n                                    <p class=\"text-div-para\">Mapping valuable insights from the FOP patient community in the UK and Spain<\/p>\n                                <\/a>\n                                <p>FOP is an ultra-rare genetic disorder where extra bone formation takes place in soft tissues, including muscles, tendons and ligaments, causing irreversible and progressive loss&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"36420\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/putting-yourself-in-the-shoes-of-someone-with-an-ultra-rare-condition-the-first-fop-immersive-experience\/\" title=\"Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience\" aria-label=\"Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2023\/08\/29124942\/Image7.png\" alt=\"Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience\" title=\"Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience\" >\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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">29 August 2023<\/span>\n                            <span class=\"time-stamp visible\">2 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience\" aria-label=\"Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/putting-yourself-in-the-shoes-of-someone-with-an-ultra-rare-condition-the-first-fop-immersive-experience\/\">\n                                    <p class=\"text-div-para\">Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience<\/p>\n                                <\/a>\n                                <p>You can never truly understand what it\u2019s like to live with an ultra-rare condition unless you\u2019ve experienced it for yourself. With this in mind, we&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"10555\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/ilc-2022-lets-talk-pbc\/\" title=\"ILC 2022: Let\u2019s talk PBC\" aria-label=\"ILC 2022: Let\u2019s talk PBC\">\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: Let\u2019s talk PBC\" title=\"ILC 2022: Let\u2019s talk PBC\" >\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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">05 August 2022<\/span>\n                            <span class=\"time-stamp visible\">3 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"ILC 2022: Let\u2019s talk PBC\" aria-label=\"ILC 2022: Let\u2019s talk PBC\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/ilc-2022-lets-talk-pbc\/\">\n                                    <p class=\"text-div-para\">ILC 2022: Let\u2019s talk PBC<\/p>\n                                <\/a>\n                                <p>The International Liver Congress (ILC)1 provides a key opportunity for us to meet and discuss the management and research of liver diseases. Given the online&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"36410\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/learning-the-impacts-of-fop-from-patients-and-their-families-the-burden-of-illness-study\/\" title=\"Learning the impacts of FOP from patients and their families \u2013 The Burden of Illness study\" aria-label=\"Learning the impacts of FOP from patients and their families \u2013 The Burden of Illness study\">\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=\"Learning the impacts of FOP from patients and their families \u2013 The Burden of Illness study\" title=\"Learning the impacts of FOP from patients and their families \u2013 The Burden of Illness study\" >\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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">29 August 2023<\/span>\n                            <span class=\"time-stamp visible\">2 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Learning the impacts of FOP from patients and their families \u2013 The Burden of Illness study\" aria-label=\"Learning the impacts of FOP from patients and their families \u2013 The Burden of Illness study\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/learning-the-impacts-of-fop-from-patients-and-their-families-the-burden-of-illness-study\/\">\n                                    <p class=\"text-div-para\">Learning the impacts of FOP from patients and their families \u2013 The Burden of Illness study<\/p>\n                                <\/a>\n                                <p>Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disorder where extra bone formation takes place in soft tissues, including muscles, tendons and ligaments, causing irreversible&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"10915\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/living-with-pbc-the-person-behind-the-chart\/\" title=\"Living with PBC: The Person Behind the Chart\" aria-label=\"Living with PBC: The Person Behind the Chart\">\n                                                                              <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2022\/12\/05095833\/R-Mitchell.png\" alt=\"Living with PBC: The Person Behind the Chart\" title=\"Living with PBC: The Person Behind the Chart\" >\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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">20 December 2022<\/span>\n                            <span class=\"time-stamp visible\">1 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Living with PBC: The Person Behind the Chart\" aria-label=\"Living with PBC: The Person Behind the Chart\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/living-with-pbc-the-person-behind-the-chart\/\">\n                                    <p class=\"text-div-para\">Living with PBC: The Person Behind the Chart<\/p>\n                                <\/a>\n                                <p>\u2018Invisible\u2019 diseases like primary biliary cholangitis (PBC) can be difficult to recognise, diagnose and to manage effectively. Here Prof. Gideon Hirschfield (University of Toronto, Departments&#8230;<\/p>\n                            <\/div>\n                          <\/div>\n                        <\/div>\n                                      <!-- product box-featured story listing -->\n                        <div class=\"product-box\" data-id=\"22962\">\n                          <!-- img-container -->\n                            <div class=\"p-img-container\">\n                                <div class=\"p-img\">\n                                  <a href=\"https:\/\/www.ipsen.com\/rare-diseases\/understanding-the-true-impact-of-living-with-fop\/\" title=\"Understanding the true impact of living with FOP\" aria-label=\"Understanding the true impact of living with 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=\"Understanding the true impact of living with FOP\" title=\"Understanding the true impact of living with 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:#7dc1e5;\">\n                                  Rare Disease                                <\/button>\n                                                        <span class=\"time-stamp visible\">12 May 2023<\/span>\n                            <span class=\"time-stamp visible\">4 mins read<\/span>\n                            <div class=\"text-div\">\n                            <a title=\"Understanding the true impact of living with FOP\" aria-label=\"Understanding the true impact of living with FOP\" href=\"https:\/\/www.ipsen.com\/rare-diseases\/understanding-the-true-impact-of-living-with-fop\/\">\n                                    <p class=\"text-div-para\">Understanding the true impact of living with FOP<\/p>\n                                <\/a>\n                                <p>This year marks the 17th&nbsp;anniversary since the discovery of the&nbsp;ACVR1&nbsp;gene was announced, a major scientific milestone in fibrodysplasia ossificans progressiva (FOP) research that helped us&#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 with 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 on 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 on FOP\" title=\"Focus on 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                                                <\/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 info-box\">\n                    <div class=\"info-icon\">\n              <span class=\"info-circle\"><img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/alert-info-icon.png\" alt=\"Alert Icon\" title=\"Alert Icon\" \/><\/i>\n            <\/div>\n                    <div class=\"info-contents\">\n            <p class=\"info-head visible\">Request medical information \/ report adverse event or product complaint<\/p>\n            <p class=\"info-sub-head-para visible\"><\/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":32,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-18045","page","type-page","status-publish","hentry","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Collaborating with the rare disease patient community | Ipsen Global<\/title>\n<meta name=\"description\" content=\"Learn about Ipsen&#039;s &#039;Together for Rare Disease&#039; initiative. Committed to providing specialized care and innovative solutions for rare disease patients.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ipsen.com\/patients\/together-for-rare-disease\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Collaborating with the rare disease patient community | Ipsen Global\" \/>\n<meta property=\"og:description\" content=\"Learn about Ipsen&#039;s &#039;Together for Rare Disease&#039; initiative. 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