{"id":9568,"date":"2025-04-15T00:02:08","date_gmt":"2025-04-14T22:02:08","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=9568"},"modified":"2025-04-15T00:02:08","modified_gmt":"2025-04-14T22:02:08","slug":"conoce-los-ponentes-del-xll-congreso-iberoamericano-de-ee-rr-de-aliber-2","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/04\/15\/conoce-los-ponentes-del-xll-congreso-iberoamericano-de-ee-rr-de-aliber-2\/","title":{"rendered":"Conoce los ponentes del Xll Congreso Iberoamericano de EE. RR de ALIBER"},"content":{"rendered":"<p><strong>Juan Carri\u00f3n <\/strong><\/p>\n<p><em>Presidente de la Alianza Iberoamericana de Enfermedades Raras (ALIBER) y de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER).<\/em><\/p>\n<p>Destacado li\u0301der en el a\u0301mbito de las enfermedades raras. Desde 2013, preside la Alianza Iberoamericana de Enfermedades Raras &#8211; ALIBER, organizacio\u0301n que impulso\u0301 para fortalecer la colaboracio\u0301n entre asociaciones de habla hispana y portuguesa.<\/p>\n<p>Adema\u0301s, desde 2012, lidera la Federacio\u0301n Espan\u0303ola de Enfermedades Raras &#8211; FEDER y su Fundacio\u0301n, promoviendo iniciativas para mejorar la calidad de vida de quienes conviven con estas patologi\u0301as.<\/p>\n<p>Su compromiso tambie\u0301n se refleja en la presidencia de la Asociacio\u0301n de Enfermedades Raras y otros Trastornos Graves del Desarrollo &#8211; D&#8217;Genes y en la fundacio\u0301n de la Asociacio\u0301n Espan\u0303ola de Lipodistrofias &#8211; AELIP.<\/p>\n<p>En 2024, represento\u0301 a ALIBER y FEDER en un foro paralelo a la Asamblea Mundial de la Salud en Ginebra, destacando los desafi\u0301os que enfrentan las personas con enfermedades raras y sin diagno\u0301stico.<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-9569 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Juan-Carrion.jpg\" alt=\"\" width=\"997\" height=\"1280\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Juan-Carrion.jpg 997w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Juan-Carrion-234x300.jpg 234w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Juan-Carrion-798x1024.jpg 798w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/04\/Juan-Carrion-768x986.jpg 768w\" sizes=\"(max-width: 997px) 100vw, 997px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Juan Carri\u00f3n Presidente de la Alianza Iberoamericana de Enfermedades Raras (ALIBER) y de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER). Destacado li\u0301der en el a\u0301mbito de las enfermedades raras. Desde<a href=\"https:\/\/aliber.org\/web\/2025\/04\/15\/conoce-los-ponentes-del-xll-congreso-iberoamericano-de-ee-rr-de-aliber-2\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":1,"featured_media":9569,"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-9568","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\/9568","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=9568"}],"version-history":[{"count":1,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9568\/revisions"}],"predecessor-version":[{"id":9570,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9568\/revisions\/9570"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/9569"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=9568"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=9568"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=9568"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}