{"id":54,"date":"2024-01-17T13:59:13","date_gmt":"2024-01-17T11:59:13","guid":{"rendered":"https:\/\/www.ipsen.com\/it\/?page_id=54"},"modified":"2025-07-11T15:38:44","modified_gmt":"2025-07-11T13:38:44","slug":"insieme-nelle-malattie-rare","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/it\/iniziative\/insieme-nelle-malattie-rare\/","title":{"rendered":"Insieme nelle Malattie Rare"},"content":{"rendered":"    <section class=\"sub-page-banner bg-img-enabled  banner-no-filter\" style=\"background-image:url(https:\/\/www.ipsen.com\/it\/wp-content\/uploads\/sites\/9\/2025\/07\/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\/it\">Home<\/a><\/li><li class=\"breadcrumb-item visible\"><a href=\"https:\/\/www.ipsen.com\/it\/iniziative\/\">Iniziative<\/a><\/li><li class=\"breadcrumb-item active\"><a class=\"link-pointer-events-none\" href=\"#\" aria-current=\"page\">Insieme nelle Malattie Rare<\/a><\/li><\/ol>\n            <\/nav>            <h1 class=\"visible banner-font-color-white\">Insieme nelle Malattie Rare<\/h1>\n            <p class=\"visible banner-font-color-white\">Dedichiamo il nostro impegno scientifico alle persone con malattie rare<\/p>\n        <\/div>\n    <\/section>\n\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\/it\/wp-content\/uploads\/sites\/9\/2025\/07\/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                                                            <span class=\"dash\"><\/span>\n                                <h4 class=\"heading-para heading-four\" role=\"heading\" aria-level=\"2\">\n                                    Mettiamo la nostra scienza al servizio delle persone                                <\/h4>\n                                                    <\/div>\n                                                <p>Collaboriamo con la comunit\u00e0 delle persone con malattie rare, per raccogliere evidenze ed esperienze sui loro bisogni e sulla loro qualit\u00e0 della vita affinch\u00e9 possano guidare il nostro lavoro &#8211; dagli studi clinici alle scoperte scientifiche, fino ai nostri servizi &#8211; in linea con i loro reali bisogni.<\/p>\n                            <a \n                            aria-label=\" about Mettiamo la nostra scienza al servizio delle persone\"  \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-old-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                                Il nostro impegno con la comunit\u00e0 dei pazienti con malattie rare                            <\/h3>\n                            <p class=\"text-graph-para charcoal-grey visible\">Una collaborazione costante, in tutto il mondo, su diversi progetti, in tutte le fasi del nostro lavoro, dalla ricerca e sviluppo all\u2019informazione degli studi clinici, ai programmi di supporto ai pazienti.<\/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=\"Precedente\" class=\"glider-graphic-card-prev\"><span><\/span><\/button>\n                                                    <button aria-hidden=\"true\" aria-label=\"Prossimo\" 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                                                        \n                                                                <!-- Graphic Card With OLD layout start here -->\n                                                                <div class=\"column-1\">\n                                                                                                                                                <div class=\"text-graph-img visible graphic-icon-enabled \">\n                                                                                                                                                                    <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/it\/wp-content\/uploads\/sites\/9\/2024\/04\/UNIAMO-1.jpg\" alt=\"\" \/> \n                                                                                                                                                            <\/div>\n                                                                                                                                    <\/div>\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"text-graph-content\">\n                                                                                                                                                <div class=\"text-graph-desc\">\n                                                                            <p><p>UNIAMO, Federazione Italiana Malattie Rare, \u00e8 l\u2019ente di rappresentanza della comunit\u00e0 delle persone con malattia rara. Opera da 25 anni per la tutela e la difesa dei diritti delle persone con malattia rara e delle loro famiglie, ha oltre 200 associazioni affiliate in continua crescita.<\/p>\n<\/p>\n                                                                        <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With OLD layout end here -->\n                                                        \n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                    <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                        \n                                                                <!-- Graphic Card With OLD layout start here -->\n                                                                <div class=\"column-1\">\n                                                                                                                                                <div class=\"text-graph-img visible graphic-icon-enabled \">\n                                                                                                                                                                    <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/it\/wp-content\/uploads\/sites\/9\/2024\/04\/EPAC_1.png\" alt=\"\" \/> \n                                                                                                                                                            <\/div>\n                                                                                                                                    <\/div>\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"text-graph-content\">\n                                                                                                                                                <div class=\"text-graph-desc\">\n                                                                            <p><p>Dalla nascita offre i suoi servizi di counselling, educazione, prevenzione ed informazione\u00a0sulle epatiti e le malattie del fegato, per aiutare, sostenere, informare i pazienti, le loro famiglie e chiunque abbia necessit\u00e0, con l\u2019obiettivo ultimo di migliorare la qualit\u00e0 della vita dell&#8217;ammalato e aumentarne il benessere.<\/p>\n<\/p>\n                                                                        <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With OLD layout end here -->\n                                                        \n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                    <div class=\"text-graphic\">\n                                                    <div class=\"text-graph-row\">\n                                                        \n                                                                <!-- Graphic Card With OLD layout start here -->\n                                                                <div class=\"column-1\">\n                                                                                                                                                <div class=\"text-graph-img visible graphic-icon-enabled \">\n                                                                                                                                                                    <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/it\/wp-content\/uploads\/sites\/9\/2024\/04\/PFIC-ITALIA_1.png\" alt=\"\" \/> \n                                                                                                                                                            <\/div>\n                                                                                                                                    <\/div>\n                                                                <div class=\"column-2\">\n                                                                    <div class=\"text-graph-content\">\n                                                                                                                                                <div class=\"text-graph-desc\">\n                                                                            <p><p>PFIC Italia Network \u00e8 l&#8217;associazione di pazienti pediatrici con colestasi intraepatica familiare progressiva (PFIC), patologia rara di origine genetica che causa la compromissione del normale processo di formazione della bile, che rimane perci\u00f2 nel fegato e lo intossica, al punto da rendere necessario il trapianto d\u2019organo.<\/p>\n<\/p>\n                                                                        <\/div>\n                                                                    <\/div>\n                                                                <\/div>\n                                                                <!-- Graphic Card With OLD 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    <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                    Vivere con una malattia rara                <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary visible\"> \n                    <p>1 persona su 10 ha una malattia rara.\u00a0Sono oltre 350-400 milioni coloro che nel mondo convivono con una delle 7.000 patologie rare.<br \/>\nDietro ognuno di loro c\u2019\u00e8 una storia, e nessuno pu\u00f2 raccontarla meglio di chi la conosce da vicino.<\/p>\n                <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"Presentazione &quot;Il Drago Ruba Bellezza&quot;\" src=\"https:\/\/player.vimeo.com\/video\/1022568470?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\/it\/wp-content\/uploads\/sites\/9\/2025\/07\/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                                    Collabora con noi                                <\/h4>\n                                                    <\/div>\n                                                <p>Crediamo che la collaborazione con pazienti e associazioni possa aiutarci a fare meglio e di pi\u00f9 per migliorare la qualit\u00e0 di vita delle persone con tumore. Scopri come collaborare con noi e dare vita a progetti condivisi.<\/p>\n                            <a \n                            aria-label=\"Scrivici about Collabora con noi\"  \n                                role=\"link\" \n                                class=\"btn-link section-btn cta-visible\"\n                                href=\"https:\/\/www.ipsen.com\/it\/contattaci\/\" \n                                target=\"_self\"\n                            > \n                                Scrivici \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                        Scopri alcuni dei nostri progetti                    <\/h6>\n                <\/div>\n                <div class=\"quick-link-list\">\n                    <ul style=\"border: 1px solid #C4C9CB\">\n                                                        <li>\n                                   <a href=\"https:\/\/vimeo.com\/1016094989\" target=\"_blank\">\n                                        <span class=\"quick-link-text\">Francesca Lombardozzi, Presidente di PFIC Italia Network racconta la sua storia con la PFIC<\/span>\n                                                &nbsp;&nbsp;<span class=\"target-blank\"> <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/it\/wp-content\/themes\/ipsen-main\/dist\/images\/forward.png\" alt=\"Francesca Lombardozzi, Presidente di PFIC Italia Network racconta la sua storia con la PFIC Open in new tab\"><\/span>\n                                                                            <\/a>\n                                <\/li>\n                                                            <li>\n                                   <a href=\"https:\/\/www.youtube.com\/watch?v=aTGoPU2pR-E\" target=\"_blank\">\n                                        <span class=\"quick-link-text\">Conoscere la Colangite Biliare Primitiva (PBC)<\/span>\n                                                &nbsp;&nbsp;<span class=\"target-blank\"> <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/it\/wp-content\/themes\/ipsen-main\/dist\/images\/forward.png\" alt=\"Conoscere la Colangite Biliare Primitiva (PBC) Open in new tab\"><\/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":47,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-54","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>Insieme nelle malattie rare<\/title>\n<meta name=\"description\" content=\"Evolviamo continuamente nel nostro impegno scientifico per fare la differenza nella vita delle persone con malattie rare.\" \/>\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\/it\/iniziative\/insieme-nelle-malattie-rare\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" 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