{"id":3200,"date":"2023-10-10T08:45:59","date_gmt":"2023-10-10T06:45:59","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=news&#038;p=3200"},"modified":"2023-10-10T08:46:00","modified_gmt":"2023-10-10T06:46:00","slug":"the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns","status":"publish","type":"news","link":"https:\/\/ern-ithaca.eu\/es\/events-news\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/","title":{"rendered":"The rare disease community comes together in calling on the EU &#038; national institutions to stand by the ERNs"},"content":{"rendered":"<p class=\"wp-block-paragraph\">We, the undersigned, representing the European Reference Networks (ERNs) and people<br>living with a rare disease across Europe, call on the EU institutions and EU Member States\u2019<br>governments to stand by the European Reference Networks and to uphold their<br>commitment to enable long-lasting impact in people\u2019s lives and, fundamentally, give all<br>people living with a rare or complex condition in Europe the same opportunities to access<br>timely and adequate specialised healthcare<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Read the open letter in full <a href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2023\/10\/ERNs-open-letter-to-EU-Institutions.pdf\">aqu\u00ed<\/a>. <\/p>","protected":false},"excerpt":{"rendered":"<p>We, the undersigned, representing the European Reference Networks (ERNs) and peopleliving with a rare disease across Europe, call on the EU institutions and EU Member States\u2019governments to stand by the European Reference Networks and to uphold theircommitment to enable long-lasting impact in people\u2019s lives and, fundamentally, give allpeople living with a rare or complex condition [&hellip;]<\/p>\n","protected":false},"featured_media":0,"template":"","categories":[],"tags":[],"class_list":["post-3200","news","type-news","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>The rare disease community comes together in calling on the EU &amp; national institutions to stand by the ERNs - 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\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The rare disease community comes together in calling on the EU &amp; national institutions to stand by the ERNs - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"We, the undersigned, representing the European Reference Networks (ERNs) and peopleliving with a rare disease across Europe, call on the EU institutions and EU Member States\u2019governments to stand by the European Reference Networks and to uphold theircommitment to enable long-lasting impact in people\u2019s lives and, fundamentally, give allpeople living with a rare or complex condition [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/es\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2023-10-10T06:46:00+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/news\\\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/news\\\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\\\/\",\"name\":\"The rare disease community comes together in calling on the EU & national institutions to stand by the ERNs - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"datePublished\":\"2023-10-10T06:45:59+00:00\",\"dateModified\":\"2023-10-10T06:46:00+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/news\\\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/news\\\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/news\\\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\\\/#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\":\"The rare disease community comes together in calling on the EU &#038; national institutions to stand by the ERNs\"}]},{\"@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":"The rare disease community comes together in calling on the EU & national institutions to stand by the ERNs - 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\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/","og_locale":"es_ES","og_type":"article","og_title":"The rare disease community comes together in calling on the EU & national institutions to stand by the ERNs - ERN ITHACA","og_description":"We, the undersigned, representing the European Reference Networks (ERNs) and peopleliving with a rare disease across Europe, call on the EU institutions and EU Member States\u2019governments to stand by the European Reference Networks and to uphold theircommitment to enable long-lasting impact in people\u2019s lives and, fundamentally, give allpeople living with a rare or complex condition [&hellip;]","og_url":"https:\/\/ern-ithaca.eu\/es\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/","og_site_name":"ERN ITHACA","article_modified_time":"2023-10-10T06:46:00+00:00","twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/","url":"https:\/\/ern-ithaca.eu\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/","name":"The rare disease community comes together in calling on the EU & national institutions to stand by the ERNs - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"datePublished":"2023-10-10T06:45:59+00:00","dateModified":"2023-10-10T06:46:00+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/news\/the-rare-disease-community-comes-together-in-calling-on-the-eu-national-institutions-to-stand-by-the-erns\/#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":"The rare disease community comes together in calling on the EU &#038; national institutions to stand by the ERNs"}]},{"@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\/3200","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=3200"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/categories?post=3200"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/tags?post=3200"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}