{"id":9772,"date":"2025-05-08T16:07:22","date_gmt":"2025-05-08T14:07:22","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=9772"},"modified":"2025-05-08T16:07:22","modified_gmt":"2025-05-08T14:07:22","slug":"cuando-lo-raro-importa-liderazgo-en-salud-publica-desde-uruguay-programa-de-enfermedades-raras-y-anomalias-congenitas","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/05\/08\/cuando-lo-raro-importa-liderazgo-en-salud-publica-desde-uruguay-programa-de-enfermedades-raras-y-anomalias-congenitas\/","title":{"rendered":"Cuando lo raro importa: liderazgo en salud p\u00fablica desde Uruguay, Programa de Enfermedades Raras y Anomal\u00edas Cong\u00e9nitas"},"content":{"rendered":"<p>Dra. Mariela Larrandaburu, MSc, PhD \u2013 Coordinadora del Programa de Enfermedades Raras y Anomal\u00edas Cong\u00e9nitas, Ministerio de Salud P\u00fablica de Uruguay<\/p>\n<p>La ponencia abord\u00f3 los desaf\u00edos y avances del abordaje p\u00fablico de las enfermedades raras y anomal\u00edas gen\u00e9ticas en Uruguay.<\/p>\n<p>Se resaltaron aspectos relacionados con la vigilancia, la detecci\u00f3n temprana, el fortalecimiento de capacidades profesionales y la articulaci\u00f3n entre sectores como elementos clave para avanzar en pol\u00edticas sostenibles y centradas en las personas que viven con estas condiciones.<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-9773 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/Mariela-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/Mariela-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/Mariela-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/Mariela-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/Mariela-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/Mariela-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dra. Mariela Larrandaburu, MSc, PhD \u2013 Coordinadora del Programa de Enfermedades Raras y Anomal\u00edas Cong\u00e9nitas, Ministerio de Salud P\u00fablica de Uruguay La ponencia abord\u00f3 los desaf\u00edos y avances del abordaje<a href=\"https:\/\/aliber.org\/web\/2025\/05\/08\/cuando-lo-raro-importa-liderazgo-en-salud-publica-desde-uruguay-programa-de-enfermedades-raras-y-anomalias-congenitas\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":1,"featured_media":9773,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[2,8,3,138],"tags":[],"class_list":["post-9772","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aliber","category-encuentros","category-eventos","category-noticias"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9772","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/comments?post=9772"}],"version-history":[{"count":1,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9772\/revisions"}],"predecessor-version":[{"id":9774,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9772\/revisions\/9774"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/9773"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=9772"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=9772"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=9772"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}