{"id":9142,"date":"2026-03-03T13:58:03","date_gmt":"2026-03-03T12:58:03","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=news&#038;p=9142"},"modified":"2026-03-03T13:58:19","modified_gmt":"2026-03-03T12:58:19","slug":"hlm4rare-a-new-plan-of-action-for-rare-diseases","status":"publish","type":"news","link":"https:\/\/ern-ithaca.eu\/es\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/","title":{"rendered":"HLM4RARE: un nuevo plan de acci\u00f3n para las enfermedades raras"},"content":{"rendered":"<p class=\"wp-block-paragraph\">En diciembre de 2025, <strong>HLM RARE 2025 <\/strong>reuni\u00f3 en Bruselas a responsables pol\u00edticos de la UE, redes europeas de referencia (ERN), asociaciones de pacientes, investigadores y l\u00edderes del sector con el fin de impulsar un ecosistema europeo m\u00e1s s\u00f3lido para las enfermedades raras y complejas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Un hito clave fue el lanzamiento del <strong>Declaraci\u00f3n sobre un ecosistema europeo de innovaci\u00f3n y atenci\u00f3n sanitaria para las enfermedades raras y complejas<\/strong>, un compromiso pol\u00edtico estructurado en torno a ocho prioridades, que abarcan desde un Plan de Acci\u00f3n de la UE sobre Enfermedades Raras hasta el refuerzo de las Redes Europeas de Referencia (ERN), el acceso equitativo a los diagn\u00f3sticos y tratamientos, la integraci\u00f3n de la evidencia del mundo real y la financiaci\u00f3n sostenible (v\u00e9ase m\u00e1s informaci\u00f3n a continuaci\u00f3n).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Con m\u00e1s de 60 organizaciones que firmaron la Declaraci\u00f3n y m\u00e1s de 500 participantes implicados, la Reuni\u00f3n de Alto Nivel de RARE puso de manifiesto un claro impulso y una ambici\u00f3n compartida por toda la comunidad.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ahora, la iniciativa evoluciona. En 2026, HLM RARE se transforma en <strong>HLM4RARE, la Misi\u00f3n de Liderazgo Sanitario para las Enfermedades Raras<\/strong>. El enfoque pasa de la alineaci\u00f3n pol\u00edtica a la ejecuci\u00f3n: ocho grupos de trabajo integrados por diversas partes interesadas elaborar\u00e1n planes de acci\u00f3n concretos y espec\u00edficos para convertir las recomendaciones de la Declaraci\u00f3n en un impacto cuantificable.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u00a1Desde la visi\u00f3n hasta la puesta en pr\u00e1ctica, comienza la siguiente fase!<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para obtener m\u00e1s informaci\u00f3n sobre el proyecto HLM4RARE, consulta este documento: <a href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2026\/03\/9h15-HLM4RARE_ERN-Coordinators-10-Feb-meeting_final.pdf\">https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2026\/03\/9h15-HLM4RARE_ERN-Coordinators-10-Feb-meeting_final.pdf<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>In December 2025, HLM RARE 2025 brought together EU policymakers, ERNs, patient organisations, researchers and industry leaders in Brussels to advance a stronger European ecosystem for rare and complex diseases. A key milestone was the launch of the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases, a political commitment structured [&hellip;]<\/p>\n","protected":false},"featured_media":0,"template":"","categories":[],"tags":[],"class_list":["post-9142","news","type-news","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>HLM4RARE : a new plan of action for rare diseases - ERN ITHACA<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ern-ithaca.eu\/es\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"HLM4RARE : a new plan of action for rare diseases - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"In December 2025, HLM RARE 2025 brought together EU policymakers, ERNs, patient organisations, researchers and industry leaders in Brussels to advance a stronger European ecosystem for rare and complex diseases. A key milestone was the launch of the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases, a political commitment structured [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/es\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-03T12:58:19+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\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:\\\/\\\/ern-ithaca.eu\\\/events-news\\\/news\\\/hlm4rare-a-new-plan-of-action-for-rare-diseases\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/events-news\\\/news\\\/hlm4rare-a-new-plan-of-action-for-rare-diseases\\\/\",\"name\":\"HLM4RARE : a new plan of action for rare diseases - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"datePublished\":\"2026-03-03T12:58:03+00:00\",\"dateModified\":\"2026-03-03T12:58:19+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/events-news\\\/news\\\/hlm4rare-a-new-plan-of-action-for-rare-diseases\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/events-news\\\/news\\\/hlm4rare-a-new-plan-of-action-for-rare-diseases\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/events-news\\\/news\\\/hlm4rare-a-new-plan-of-action-for-rare-diseases\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"NEWS & EVENTS > NEWS\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/events-news\\\/news\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"HLM4RARE : a new plan of action for rare diseases\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"name\":\"ERN ITHACA\",\"description\":\"WELCOME TO ERN-ITHACA WEBSITE!\",\"publisher\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/ern-ithaca.eu\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"es\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\",\"name\":\"ERN-ITHACA\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"width\":454,\"height\":172,\"caption\":\"ERN-ITHACA\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/x.com\\\/ERNIthaca\",\"https:\\\/\\\/www.linkedin.com\\\/company\\\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\\\/?viewAsMember=true\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"HLM4RARE : a new plan of action for rare diseases - ERN ITHACA","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:\/\/ern-ithaca.eu\/es\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/","og_locale":"es_ES","og_type":"article","og_title":"HLM4RARE : a new plan of action for rare diseases - ERN ITHACA","og_description":"In December 2025, HLM RARE 2025 brought together EU policymakers, ERNs, patient organisations, researchers and industry leaders in Brussels to advance a stronger European ecosystem for rare and complex diseases. A key milestone was the launch of the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases, a political commitment structured [&hellip;]","og_url":"https:\/\/ern-ithaca.eu\/es\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/","og_site_name":"ERN ITHACA","article_modified_time":"2026-03-03T12:58:19+00:00","twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","twitter_misc":{"Tiempo de lectura":"1 minuto"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/","url":"https:\/\/ern-ithaca.eu\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/","name":"HLM4RARE : a new plan of action for rare diseases - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"datePublished":"2026-03-03T12:58:03+00:00","dateModified":"2026-03-03T12:58:19+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/events-news\/news\/hlm4rare-a-new-plan-of-action-for-rare-diseases\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ern-ithaca.eu\/"},{"@type":"ListItem","position":2,"name":"NEWS & EVENTS > NEWS","item":"https:\/\/ern-ithaca.eu\/events-news\/news\/"},{"@type":"ListItem","position":3,"name":"HLM4RARE : a new plan of action for rare diseases"}]},{"@type":"WebSite","@id":"https:\/\/ern-ithaca.eu\/#website","url":"https:\/\/ern-ithaca.eu\/","name":"ERN ITHACA","description":"WELCOME TO ERN-ITHACA WEBSITE!","publisher":{"@id":"https:\/\/ern-ithaca.eu\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ern-ithaca.eu\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"es"},{"@type":"Organization","@id":"https:\/\/ern-ithaca.eu\/#organization","name":"ERN-ITHACA","url":"https:\/\/ern-ithaca.eu\/","logo":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","width":454,"height":172,"caption":"ERN-ITHACA"},"image":{"@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/x.com\/ERNIthaca","https:\/\/www.linkedin.com\/company\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\/?viewAsMember=true"]}]}},"_links":{"self":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/news\/9142","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/news"}],"about":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/types\/news"}],"wp:attachment":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/media?parent=9142"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/categories?post=9142"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/tags?post=9142"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}