{"id":9571,"date":"2025-04-15T21:47:37","date_gmt":"2025-04-15T19:47:37","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=9571"},"modified":"2025-04-15T21:47:37","modified_gmt":"2025-04-15T19:47:37","slug":"conoce-los-ponentes-del-xll-congreso-iberoamericano-de-ee-rr-de-aliber-3","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/04\/15\/conoce-los-ponentes-del-xll-congreso-iberoamericano-de-ee-rr-de-aliber-3\/","title":{"rendered":"Conoce los ponentes del Xll Congreso Iberoamericano de EE. RR de ALIBER"},"content":{"rendered":"<p><strong>Dra. Kirsten Johnson<\/strong><\/p>\n<p><strong>\u00a0<\/strong><em>Presidenta del Consejo de Rare Diseases International<\/em><\/p>\n<p>La Dra. Kirsten Johnson ejerce como Presidenta del Consejo de Rare Diseases International &#8211; RDI y es cofundadora de Fragile X International, organizacio\u0301n global dedicada a respaldar a personas y familias afectadas por el Si\u0301ndrome de X Fra\u0301gil y las condiciones asociadas a la premutacio\u0301n del gen FMR1.<\/p>\n<p>Asimismo, integra la junta directiva de EURORDIS \u2013 Rare Diseases Europe, desde donde promueve cambios en poli\u0301ticas pu\u0301blicas, el diagno\u0301stico temprano y la expansio\u0301n de programas de cribado neonatal para las enfermedades raras.<\/p>\n<p>Su compromiso con esta causa esta\u0301 profundamente vinculado a su historia personal: es portadora de la premutacio\u0301n FMR1, tiene dos hijas adultas con Si\u0301ndrome de X Fra\u0301gil, y su esposo vive con una forma rara de ca\u0301ncer (leucemia de ce\u0301lulas pilosas).<\/p>\n<p>Esta experiencia familiar la ha llevado a abogar por un lenguaje gene\u0301tico inclusivo, logrando, entre otros hitos, la eliminacio\u0301n de terminologi\u0301a estigmatizante en la nomenclatura del gen FMR1 tras la publicaci\u00f3n de un art\u00edculo cient\u00edfico que repercutio\u0301 a nivel internacional.<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-9572 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Dra-Kirsten.jpg\" alt=\"\" width=\"997\" height=\"1280\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Dra-Kirsten.jpg 997w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Dra-Kirsten-234x300.jpg 234w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Dra-Kirsten-798x1024.jpg 798w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Dra-Kirsten-768x986.jpg 768w\" sizes=\"(max-width: 997px) 100vw, 997px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dra. Kirsten Johnson \u00a0Presidenta del Consejo de Rare Diseases International La Dra. Kirsten Johnson ejerce como Presidenta del Consejo de Rare Diseases International &#8211; RDI y es cofundadora de Fragile<a href=\"https:\/\/aliber.org\/web\/2025\/04\/15\/conoce-los-ponentes-del-xll-congreso-iberoamericano-de-ee-rr-de-aliber-3\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":1,"featured_media":9572,"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-9571","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\/9571","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=9571"}],"version-history":[{"count":1,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9571\/revisions"}],"predecessor-version":[{"id":9573,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9571\/revisions\/9573"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/9572"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=9571"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=9571"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=9571"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}