{"id":3784,"date":"2018-05-25T10:22:23","date_gmt":"2018-05-25T10:22:23","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/25\/las-enfermedades-raras-por-primera-vez-en-la-asamblea-mundial-de-la-salud\/"},"modified":"2018-05-25T10:22:23","modified_gmt":"2018-05-25T10:22:23","slug":"las-enfermedades-raras-por-primera-vez-en-la-asamblea-mundial-de-la-salud","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/25\/las-enfermedades-raras-por-primera-vez-en-la-asamblea-mundial-de-la-salud\/","title":{"rendered":"Las Enfermedades Raras, por primera vez en la Asamblea Mundial de la Salud"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Fuente: <span style=\"text-decoration: underline\"><a href=\"https:\/\/www.rarediseasesinternational.org\/rare-diseases-mentioned-first-time-71st-wha\/\" target=\"_blank\">RDI<\/a><\/span> | Paloma Tejada, directora de Rare Diseases International (RDI), hizo una declaraci\u00f3n oficial en la Asamblea Mundial de la Salud de la Organizaci\u00f3n Mundial de la Salud (OMS) en Ginebra (del lunes 21 al viernes 26 de mayo).<\/p>\n<p>La declaraci\u00f3n es el producto de una colaboraci\u00f3n conjunta entre varias organizaciones con el estatus de \u00abrelaciones especiales con la OMS\u00bb (Federaci\u00f3n Internacional de Talasemia, Federaci\u00f3n Mundial de Hemofilia, Alianza Internacional de Organizaciones de Pacientes y March of Dimes) y las organizaciones coordinadoras que son miembros del Comit\u00e9 de ONG para Enfermedades Raras, incluido \u00c5grenska, EURORDIS-Enfermedades Raras Europa, Alianza Internacional de Mujeres, Federaci\u00f3n Internacional de Espina B\u00edfida e Hidrocefalia y Enfermedades Raras Internacionales.<\/p>\n<p>La declaraci\u00f3n se basa en el punto 11 del orden del d\u00eda .7 Preparaci\u00f3n de la tercera reuni\u00f3n de alto nivel de la Asamblea General sobre la prevenci\u00f3n y el control de las enfermedades no transmisibles, que se celebrar\u00e1 en 2018 \u00ab. Hace un llamamiento a los Estados miembros para que \u00abno dejen atr\u00e1s enfermedades raras importantes, pero a menudo descuidadas, cada una de las cuales afecta a un n\u00famero relativamente peque\u00f1o de pacientes, pero que colectivamente afectan a al menos 300 millones de personas en todo el mundo\u00bb. Los mensajes clave de la declaraci\u00f3n incluyen: RECONOCER la gravedad del problema; PROMOVER estrategias nacionales; PARA ABOGAR por medicinas disponibles y asequibles; y DESARROLLAR sinergias a trav\u00e9s de las fronteras.<\/p>\n<p style=\"text-align: right\"><span style=\"font-style: normal;font-weight: 400\">Fuente:&nbsp;<\/span><span style=\"font-weight: 400;font-style: normal\"><a href=\"https:\/\/www.rarediseasesinternational.org\/rare-diseases-mentioned-first-time-71st-wha\/\" target=\"_blank\">RDI<\/a>.<\/span><\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 25\/05\/2018.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/10679-las-enfermedades-raras,-por-primera-vez-en-la-asamblea-mundial-de-la-salud\" target=\"_blank\">Las Enfermedades Raras, por primera vez en la Asamblea Mundial de la Salud<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: RDI | Paloma Tejada, directora de Rare Diseases International (RDI), hizo una declaraci\u00f3n oficial en la Asamblea Mundial de la Salud de la Organizaci\u00f3n Mundial de la Salud (OMS) en Ginebra (del lunes 21 al viernes 26 de mayo). La declaraci\u00f3n es [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3784","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Las Enfermedades Raras, por primera vez en la Asamblea Mundial de la Salud - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2018\/05\/25\/las-enfermedades-raras-por-primera-vez-en-la-asamblea-mundial-de-la-salud\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Las Enfermedades Raras, por primera vez en la Asamblea Mundial de la Salud - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: RDI | Paloma Tejada, directora de Rare Diseases International (RDI), hizo una declaraci\u00f3n oficial en la Asamblea Mundial de la Salud de la Organizaci\u00f3n Mundial de la Salud (OMS) en Ginebra (del lunes 21 al viernes 26 de mayo). 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