{"id":49,"date":"2024-07-23T07:46:08","date_gmt":"2024-07-23T05:46:08","guid":{"rendered":"https:\/\/www.ipsen.com\/es\/?page_id=49"},"modified":"2024-12-05T18:31:04","modified_gmt":"2024-12-05T16:31:04","slug":"iniciativas-en-enfermedades-raras","status":"publish","type":"page","link":"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/","title":{"rendered":"Iniciativas en enfermedades raras"},"content":{"rendered":"    <section class=\"sub-page-banner bg-img\" style=\"background-image:url(https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/05084658\/Together-for-Rare-Disease_Savannah_Banner_1920x280px.jpg)\">\n        <div class=\"container content-sec\" role=\"main\" id=\"main\">\n            <nav aria-label=\"breadcrumb\">\n            <ol class=\"breadcrumb\">\n                <li class=\"breadcrumb-item\"><a href=\"https:\/\/www.ipsen.com\/spain\">Inicio<\/a><\/li><li class=\"breadcrumb-item visible\"><a href=\"https:\/\/www.ipsen.com\/spain\/pacientes\/\">Pacientes<\/a><\/li><li class=\"breadcrumb-item active\"><a class=\"link-pointer-events-none\" href=\"#\" aria-current=\"page\">Iniciativas en enfermedades raras<\/a><\/li><\/ol>\n            <\/nav>            <h1 class=\"visible\">Iniciativas en enfermedades raras<\/h1>\n            <p class=\"visible\">Colaboramos con las comunidades de pacientes que padecen enfermedades raras para poder desarrollar juntos soluciones que cambien significativamente la vida de los pacientes.<\/p>\n        <\/div>\n    <\/section>\n\n\n\n<div class=\"wp-block-columns 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\">\n<h2 class=\"wp-block-heading\">Nuestro trabajo junto con las asociaciones de pacientes<\/h2>\n\n\n\n<p>Trabajamos junto con las asociaciones de pacientes que padecen enfermedades raras de todo el mundo en variedad de proyectos diferentes, en todas las etapas de la investigaci\u00f3n y el desarrollo, en la informaci\u00f3n de estudios cl\u00ednicos y en los programas de apoyo a los pacientes.<\/p>\n<\/div>\n<\/div>\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner \">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row \">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/14143352\/Esfera-psicosocial-del-paciente-con-acromegalia_700x420-1.jpg\" alt=\"Media Image\" title=\"Media Image\">\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Esfera psicosocial del paciente con acromegalia                        <\/p>\n                        <p>La hipersecreci\u00f3n hormonal presente en la acromegalia provoca una serie de cambios corporales que pueden conllevar importantes repercusiones en la vida de los pacientes, sobre todo, si el diagn\u00f3stico es tard\u00edo. En esta gu\u00eda se revisan los diferentes aspectos relacionados con la acromegalia que pueden comportar una afectaci\u00f3n emocional y mermar la calidad de vida de las personas que padecen esta enfermedad.<\/p>\n                            <a \n                            aria-label=\"\"  \n                                role=\"link\" \n                                class=\"btn-link section-btn cta-visible\"\n                                href=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/05083841\/Esfera-psicosocial-del-paciente-con-acromegalia.pdf\" \n                                target=\"_blank\"\n                            > \n                                Descargar la gu\u00eda \n                            <\/a>\n                    <\/div>\n                <\/div>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/section>\n\n\n\n\n<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner section-reverse\">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row section-reverse\">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/12070549\/Concienciacion-sobre-la-Colangitis-Biliar-Primaria_700x420.jpg\" alt=\"Media Image\" title=\"Media Image\">\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Concienciaci\u00f3n sobre la Colangitis Biliar Primaria                        <\/p>\n                        <p>La Colangitis Biliar Primaria (CBP) es una enfermedad hep\u00e1tica autoinmune rara. Las personas con CBP conviven con s\u00edntomas como el prurito o la fatiga que condicionan de forma importante su calidad de vida y pueden llegar a desarrollar cirrosis e insuficiencia hep\u00e1tica.<\/p>\n<p>Con el objetivo de dar visibilidad a esta enfermedad y mostrar nuestro compromiso con las personas afectada, nace la campa\u00f1a Nos dejamos la piel por la CBP en colaboraci\u00f3n con la Asociaci\u00f3n para la lucha contra las enfermedades biliares (ALBI Espa\u00f1a) y la Federaci\u00f3n Nacional de Enfermos y Trasplantados Hep\u00e1ticos (FNETH).<\/p>\n<p><a href=\"https:\/\/asociacionalbi.com\/landings\/cbp-24\/?utm_source=albi&amp;utm_medium=banner&amp;utm_campaign=cbp24\" target=\"_blank\" rel=\"noopener\"><strong>Acceder campa\u00f1a CBP<\/strong><\/a><\/p>\n<p><a href=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/11084625\/Infografia-sobre-CBP.pdf\" target=\"_blank\" rel=\"noopener\"><strong>Para m\u00e1s informaci\u00f3n sobre la CBP, descarga aqu\u00ed la infograf\u00eda<\/strong><\/a><\/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<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner \">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row \">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/22133348\/PFIC-day_700x420.jpg\" alt=\"Media Image\" title=\"Media Image\">\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Concienciaci\u00f3n sobre la Colestasis Intrahep\u00e1tica Familiar Progresiva                        <\/p>\n                        <p>La CIFP, tambi\u00e9n llamada PFIC por sus siglas en ingl\u00e9s, es un conjunto de trastornos gen\u00e9ticos poco frecuentes que puede da\u00f1ar el h\u00edgado y producir insuficiencia hep\u00e1tica grave.<\/p>\n<p>Con el objetivo de dar visibilidad a esta enfermedad ultrarrara desde Ipsen, en colaboraci\u00f3n con la Federaci\u00f3n Nacional de Enfermos y Trasplantados Hep\u00e1ticos (FNETH) y la Asociaci\u00f3n para la lucha contra las enfermedades biliares (ALBI Espa\u00f1a), hemos llevado nuestra campa\u00f1a de concienciaci\u00f3n Su ilusi\u00f3n es ser bombero, la nuestra hacerla realidad por m\u00faltiples ciudades espa\u00f1olas.<\/p>\n<p><a href=\"https:\/\/vimeo.com\/1028802194?share=copy\" target=\"_blank\" rel=\"noopener\"><strong>Descargar audio campa\u00f1a CIFP<\/strong><\/a><\/p>\n<p><a href=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/11084615\/Infografia-sobre-CIFP.pdf\" target=\"_blank\" rel=\"noopener\"><strong>Para m\u00e1s informaci\u00f3n sobre la CIPF, descarga aqu\u00ed la infograf\u00eda<\/strong><\/a><\/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<!-- Text & Media Block Code -->\n<section class=\"two-col-section text-media-section\">\n    <div class=\"container two-section-innner section-reverse\">\n        <div class=\"response-inner\" style=\"background-image: url('')\">\n            <div class=\"row section-reverse\">\n                <div class=\"col-xs-12 col-sm-12 col-md-6\">\n                                                    <div class=\"img-video-section\">\n                                <img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/11\/11131525\/Rare-Diseases_700x420.jpg\" alt=\"Media Image\" title=\"Media Image\">\n                            <\/div>\n                                        <\/div>\n                <div class=\" col-xs-12 col-sm-12 col-md-6\">\n                    <div class=\"section-content\">\n                        <div class=\"heading-dash\">\n                                                    <\/div>\n                        <p class=\"section-head-two\">\n                            Colaboraciones actuales en enfermedades raras                        <\/p>\n                        <p>Somos abiertos y transparentes sobre las iniciativas y las organizaciones de pacientes que apoyamos, as\u00ed como sobre las relaciones que mantenemos con nuestras organizaciones de confianza. A continuaci\u00f3n, encontrar\u00e1 algunos de los grupos con los que colaboramos actualmente a nivel local en el \u00e1rea de las enfermedades raras.<\/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","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":45,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-49","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>Iniciativas en enfermedades raras<\/title>\n<meta name=\"description\" content=\"Colaboramos con las comunidades de pacientes que padecen enfermedades raras para poder desarrollar juntos soluciones que cambien significativamente la vida de los pacientes.\" \/>\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\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Iniciativas en enfermedades raras\" \/>\n<meta property=\"og:description\" content=\"Colaboramos con las comunidades de pacientes que padecen enfermedades raras para poder desarrollar juntos soluciones que cambien significativamente la vida de los pacientes.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/\" \/>\n<meta property=\"og:site_name\" content=\"Spain\" \/>\n<meta property=\"article:modified_time\" content=\"2024-12-05T16:31:04+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/\",\"url\":\"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/\",\"name\":\"Iniciativas en enfermedades raras\",\"isPartOf\":{\"@id\":\"https:\/\/www.ipsen.com\/spain\/#website\"},\"datePublished\":\"2024-07-23T05:46:08+00:00\",\"dateModified\":\"2024-12-05T16:31:04+00:00\",\"description\":\"Colaboramos con las comunidades de pacientes que padecen enfermedades raras para poder desarrollar juntos soluciones que cambien significativamente la vida de los pacientes.\",\"breadcrumb\":{\"@id\":\"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.ipsen.com\/spain\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Pacientes\",\"item\":\"https:\/\/www.ipsen.com\/spain\/pacientes\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Iniciativas en enfermedades raras\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.ipsen.com\/spain\/#website\",\"url\":\"https:\/\/www.ipsen.com\/spain\/\",\"name\":\"Spain\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\/\/www.ipsen.com\/spain\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.ipsen.com\/spain\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"es\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/www.ipsen.com\/spain\/#organization\",\"name\":\"Spain\",\"url\":\"https:\/\/www.ipsen.com\/spain\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\/\/www.ipsen.com\/spain\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/06\/25091900\/Logo-Ipsen-new.svg\",\"contentUrl\":\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/06\/25091900\/Logo-Ipsen-new.svg\",\"caption\":\"Spain\"},\"image\":{\"@id\":\"https:\/\/www.ipsen.com\/spain\/#\/schema\/logo\/image\/\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Iniciativas en enfermedades raras","description":"Colaboramos con las comunidades de pacientes que padecen enfermedades raras para poder desarrollar juntos soluciones que cambien significativamente la vida de los pacientes.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/","og_locale":"es_ES","og_type":"article","og_title":"Iniciativas en enfermedades raras","og_description":"Colaboramos con las comunidades de pacientes que padecen enfermedades raras para poder desarrollar juntos soluciones que cambien significativamente la vida de los pacientes.","og_url":"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/","og_site_name":"Spain","article_modified_time":"2024-12-05T16:31:04+00:00","twitter_card":"summary_large_image","twitter_misc":{"Tiempo de lectura":"1 minuto"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/","url":"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/","name":"Iniciativas en enfermedades raras","isPartOf":{"@id":"https:\/\/www.ipsen.com\/spain\/#website"},"datePublished":"2024-07-23T05:46:08+00:00","dateModified":"2024-12-05T16:31:04+00:00","description":"Colaboramos con las comunidades de pacientes que padecen enfermedades raras para poder desarrollar juntos soluciones que cambien significativamente la vida de los pacientes.","breadcrumb":{"@id":"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.ipsen.com\/spain\/pacientes\/iniciativas-en-enfermedades-raras\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.ipsen.com\/spain\/"},{"@type":"ListItem","position":2,"name":"Pacientes","item":"https:\/\/www.ipsen.com\/spain\/pacientes\/"},{"@type":"ListItem","position":3,"name":"Iniciativas en enfermedades raras"}]},{"@type":"WebSite","@id":"https:\/\/www.ipsen.com\/spain\/#website","url":"https:\/\/www.ipsen.com\/spain\/","name":"Spain","description":"","publisher":{"@id":"https:\/\/www.ipsen.com\/spain\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.ipsen.com\/spain\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"es"},{"@type":"Organization","@id":"https:\/\/www.ipsen.com\/spain\/#organization","name":"Spain","url":"https:\/\/www.ipsen.com\/spain\/","logo":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/www.ipsen.com\/spain\/#\/schema\/logo\/image\/","url":"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/06\/25091900\/Logo-Ipsen-new.svg","contentUrl":"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/sites\/17\/2024\/06\/25091900\/Logo-Ipsen-new.svg","caption":"Spain"},"image":{"@id":"https:\/\/www.ipsen.com\/spain\/#\/schema\/logo\/image\/"}}]}},"_links":{"self":[{"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/pages\/49","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/comments?post=49"}],"version-history":[{"count":14,"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/pages\/49\/revisions"}],"predecessor-version":[{"id":2695,"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/pages\/49\/revisions\/2695"}],"up":[{"embeddable":true,"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/pages\/45"}],"wp:attachment":[{"href":"https:\/\/www.ipsen.com\/spain\/wp-json\/wp\/v2\/media?parent=49"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}