{"id":17068,"date":"2024-09-06T17:24:32","date_gmt":"2024-09-06T15:24:32","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=17068"},"modified":"2025-02-06T17:25:58","modified_gmt":"2025-02-06T16:25:58","slug":"resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/","title":{"rendered":"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras"},"content":{"rendered":"<p>El 30 de agosto de 2024, Rare Diseases International (RDI), la Rep\u00fablica \u00c1rabe de Egipto, el Estado de Qatar y Espa\u00f1a organizaron conjuntamente un seminario web p\u00fablico sobre la campa\u00f1a para una resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras en 2025. El evento provoc\u00f3 debates sobre por qu\u00e9 una resoluci\u00f3n de este tipo es esencial, qu\u00e9 puede hacer por las personas que viven con una enfermedad rara a nivel regional y nacional, y qu\u00e9 se debe hacer para que la campa\u00f1a tenga \u00e9xito.<\/p>\n<p>A pesar de los recientes avances mundiales en la concienciaci\u00f3n sobre las necesidades insatisfechas de las personas que viven con una enfermedad rara, incluida la resoluci\u00f3n de las Naciones Unidas de 2021 sobre los pacientes y sus familias, la comunidad sigue enfrent\u00e1ndose a una serie de retos importantes, en particular el acceso limitado al tratamiento y la atenci\u00f3n.\u00a0 retrasos en el diagn\u00f3stico y una alta carga financiera. Estos desaf\u00edos a menudo se exacerban en los pa\u00edses de ingresos bajos y medianos (PRFI).<\/p>\n<p>Una resoluci\u00f3n de la Asamblea Mundial de la Salud sobre las enfermedades raras ayudar\u00eda a abordar estos desaf\u00edos aprovechando el impulso generado por la resoluci\u00f3n de las Naciones Unidas e instituyendo un marco mundial integral y centrado en la salud para las enfermedades raras, con objetivos y plazos claros para todos los Estados Miembros de la OMS. La campa\u00f1a a favor de una resoluci\u00f3n de este tipo fue liderada primero por RDI, y luego Egipto, Qatar, Espa\u00f1a, Malasia y Francia acordaron copatrocinarla. (\u00a9orphanews 2024.09.18)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El 30 de agosto de 2024, Rare Diseases International (RDI), la Rep\u00fablica \u00c1rabe de Egipto, el Estado de Qatar y Espa\u00f1a organizaron conjuntamente un seminario web p\u00fablico sobre la campa\u00f1a para una resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras en 2025. El evento provoc\u00f3 debates sobre por qu\u00e9 una resoluci\u00f3n [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":7205,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[27],"tags":[],"class_list":["post-17068","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sin-categorizar"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras - CUTIS LAXA INTERNATIONALE<\/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:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"El 30 de agosto de 2024, Rare Diseases International (RDI), la Rep\u00fablica \u00c1rabe de Egipto, el Estado de Qatar y Espa\u00f1a organizaron conjuntamente un seminario web p\u00fablico sobre la campa\u00f1a para una resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras en 2025. El evento provoc\u00f3 debates sobre por qu\u00e9 una resoluci\u00f3n [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/\" \/>\n<meta property=\"og:site_name\" content=\"CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\" \/>\n<meta property=\"article:published_time\" content=\"2024-09-06T15:24:32+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-02-06T16:25:58+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2018\/03\/logo_rare-diseases-international.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"300\" \/>\n\t<meta property=\"og:image:height\" content=\"85\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Marie-Claude\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Marie-Claude\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras\",\"datePublished\":\"2024-09-06T15:24:32+00:00\",\"dateModified\":\"2025-02-06T16:25:58+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/\"},\"wordCount\":283,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"Sin categorizar\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/\",\"url\":\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/\",\"name\":\"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras - CUTIS LAXA INTERNATIONALE\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#website\"},\"datePublished\":\"2024-09-06T15:24:32+00:00\",\"dateModified\":\"2025-02-06T16:25:58+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.cutislaxa.org\/es\/bienvenida\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.cutislaxa.org\/#website\",\"url\":\"https:\/\/www.cutislaxa.org\/\",\"name\":\"CUTIS LAXA INTERNATIONALE\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.cutislaxa.org\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"es\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\",\"name\":\"Cutis Laxa Internationale\",\"url\":\"https:\/\/www.cutislaxa.org\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png\",\"contentUrl\":\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png\",\"width\":417,\"height\":120,\"caption\":\"Cutis Laxa Internationale\"},\"image\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/\"},\"sameAs\":[\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\"]},{\"@type\":\"Person\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\",\"name\":\"Marie-Claude\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g\",\"caption\":\"Marie-Claude\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras - CUTIS LAXA INTERNATIONALE","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.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/","og_locale":"es_ES","og_type":"article","og_title":"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras - CUTIS LAXA INTERNATIONALE","og_description":"El 30 de agosto de 2024, Rare Diseases International (RDI), la Rep\u00fablica \u00c1rabe de Egipto, el Estado de Qatar y Espa\u00f1a organizaron conjuntamente un seminario web p\u00fablico sobre la campa\u00f1a para una resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras en 2025. El evento provoc\u00f3 debates sobre por qu\u00e9 una resoluci\u00f3n [&hellip;]","og_url":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/","og_site_name":"CUTIS LAXA INTERNATIONALE","article_publisher":"https:\/\/www.facebook.com\/CutisLaxaAssociation\/","article_published_time":"2024-09-06T15:24:32+00:00","article_modified_time":"2025-02-06T16:25:58+00:00","og_image":[{"width":300,"height":85,"url":"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2018\/03\/logo_rare-diseases-international.jpg","type":"image\/jpeg"}],"author":"Marie-Claude","twitter_card":"summary_large_image","twitter_misc":{"Escrito por":"Marie-Claude","Tiempo de lectura":"2 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/#article","isPartOf":{"@id":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/"},"author":{"name":"Marie-Claude","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045"},"headline":"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras","datePublished":"2024-09-06T15:24:32+00:00","dateModified":"2025-02-06T16:25:58+00:00","mainEntityOfPage":{"@id":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/"},"wordCount":283,"publisher":{"@id":"https:\/\/www.cutislaxa.org\/#organization"},"articleSection":["Sin categorizar"],"inLanguage":"es"},{"@type":"WebPage","@id":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/","url":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/","name":"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras - CUTIS LAXA INTERNATIONALE","isPartOf":{"@id":"https:\/\/www.cutislaxa.org\/#website"},"datePublished":"2024-09-06T15:24:32+00:00","dateModified":"2025-02-06T16:25:58+00:00","breadcrumb":{"@id":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.cutislaxa.org\/es\/resolucion-de-la-asamblea-mundial-de-la-salud-ams-sobre-enfermedades-raras\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.cutislaxa.org\/es\/bienvenida\/"},{"@type":"ListItem","position":2,"name":"Resoluci\u00f3n de la Asamblea Mundial de la Salud (AMS) sobre enfermedades raras"}]},{"@type":"WebSite","@id":"https:\/\/www.cutislaxa.org\/#website","url":"https:\/\/www.cutislaxa.org\/","name":"CUTIS LAXA INTERNATIONALE","description":"","publisher":{"@id":"https:\/\/www.cutislaxa.org\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.cutislaxa.org\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"es"},{"@type":"Organization","@id":"https:\/\/www.cutislaxa.org\/#organization","name":"Cutis Laxa Internationale","url":"https:\/\/www.cutislaxa.org\/","logo":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/","url":"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png","contentUrl":"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png","width":417,"height":120,"caption":"Cutis Laxa Internationale"},"image":{"@id":"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/CutisLaxaAssociation\/"]},{"@type":"Person","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045","name":"Marie-Claude","image":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g","caption":"Marie-Claude"}}]}},"_links":{"self":[{"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/posts\/17068","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/comments?post=17068"}],"version-history":[{"count":2,"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/posts\/17068\/revisions"}],"predecessor-version":[{"id":17070,"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/posts\/17068\/revisions\/17070"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/media\/7205"}],"wp:attachment":[{"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/media?parent=17068"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/categories?post=17068"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.cutislaxa.org\/es\/wp-json\/wp\/v2\/tags?post=17068"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}