{"id":9863,"date":"2025-05-21T20:28:41","date_gmt":"2025-05-21T18:28:41","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=9863"},"modified":"2025-05-21T22:27:52","modified_gmt":"2025-05-21T20:27:52","slug":"%f0%9d%97%94%f0%9d%97%9f%f0%9d%97%9c%f0%9d%97%95%f0%9d%97%98%f0%9d%97%a5-%f0%9d%97%b3%f0%9d%97%bc%f0%9d%97%bf%f0%9d%98%81%f0%9d%97%ae%f0%9d%97%b9%f0%9d%97%b2%f0%9d%97%b0%f0%9d%97%b2-%f0%9d%98%80","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/05\/21\/%f0%9d%97%94%f0%9d%97%9f%f0%9d%97%9c%f0%9d%97%95%f0%9d%97%98%f0%9d%97%a5-%f0%9d%97%b3%f0%9d%97%bc%f0%9d%97%bf%f0%9d%98%81%f0%9d%97%ae%f0%9d%97%b9%f0%9d%97%b2%f0%9d%97%b0%f0%9d%97%b2-%f0%9d%98%80\/","title":{"rendered":"\ud835\uddd4\ud835\udddf\ud835\udddc\ud835\uddd5\ud835\uddd8\ud835\udde5 \ud835\uddf3\ud835\uddfc\ud835\uddff\ud835\ude01\ud835\uddee\ud835\uddf9\ud835\uddf2\ud835\uddf0\ud835\uddf2 \ud835\ude00\ud835\ude02 \ud835\ude03\ud835\uddf6\ud835\uddfb\ud835\uddf0\ud835\ude02\ud835\uddf9\ud835\uddfc \ud835\uddf6\ud835\uddfb\ud835\ude00\ud835\ude01\ud835\uddf6\ud835\ude01\ud835\ude02\ud835\uddf0\ud835\uddf6\ud835\uddfc\ud835\uddfb\ud835\uddee\ud835\uddf9 \ud835\uddf0\ud835\uddfc\ud835\uddfb \ud835\udde5\ud835\uddee\ud835\uddff\ud835\uddf2 \ud835\uddd7\ud835\uddf6\ud835\ude00\ud835\uddf2\ud835\uddee\ud835\ude00\ud835\uddf2\ud835\ude00 \ud835\udddc\ud835\uddfb\ud835\ude01\ud835\uddf2\ud835\uddff\ud835\uddfb\ud835\uddee\ud835\ude01\ud835\uddf6\ud835\uddfc\ud835\uddfb\ud835\uddee\ud835\uddf9 \ud835\uddf2\ud835\uddfb \ud835\uddda\ud835\uddf6\ud835\uddfb\ud835\uddf2\ud835\uddef\ud835\uddff\ud835\uddee \ud835\uddf2\ud835\uddfb \ud835\uddf2\ud835\uddf9 \ud835\uddfa\ud835\uddee\ud835\uddff\ud835\uddf0\ud835\uddfc \ud835\uddf1\ud835\uddf2 \ud835\uddf9\ud835\uddee \ud835\uddea\ud835\udddb\ud835\uddd4\ud835\udff3\ud835\udff3."},"content":{"rendered":"<p>En el marco de la 78\u00aa Asamblea Mundial de la Salud, el presidente de <a class=\"scbZDdHASaspEUgpeaTPqGoNBLbulnZdkpWE \" tabindex=\"0\" href=\"https:\/\/www.linkedin.com\/company\/aliber-alianza-iberoamericana-de-enfermedades-raras\/\" target=\"_self\" data-test-app-aware-link=\"\">ALIBER &#8211; Alianza Iberoamericana de Enfermedades Raras<\/a>, <a id=\"ember165\" class=\"ember-view\" href=\"https:\/\/www.linkedin.com\/in\/juan-carri%C3%B3n-tudela-95941a323\/\">Juan Carri\u00f3n Tudela<\/a> y, el secretario de la Junta Directiva,\u00a0David S\u00e1nchez, sostuvieron una reuni\u00f3n estrat\u00e9gica con la\u00a0presidenta\u00a0de <a class=\"scbZDdHASaspEUgpeaTPqGoNBLbulnZdkpWE \" tabindex=\"0\" href=\"https:\/\/www.linkedin.com\/company\/rare-diseases-international\/\" target=\"_self\" data-test-app-aware-link=\"\">RARE DISEASES INTERNATIONAL<\/a>, <a id=\"ember166\" class=\"ember-view\" href=\"https:\/\/www.linkedin.com\/in\/kirstenjohnsonmusic\/\">Kirsten Johnson<\/a> y, con su CEO, <a id=\"ember167\" class=\"ember-view\" href=\"https:\/\/www.linkedin.com\/in\/alexandraheumberperry\/\">Alexandra Heumber Perry<\/a>.<\/p>\n<p>Durante el encuentro, ALIBER traslad\u00f3 el trabajo que viene desarrollando en la regi\u00f3n, reafirmando su compromiso con los\u00a047 millones de personas que conviven con enfermedades raras en Iberoam\u00e9rica. Tambi\u00e9n se present\u00f3 la experiencia de <a class=\"scbZDdHASaspEUgpeaTPqGoNBLbulnZdkpWE \" tabindex=\"0\" href=\"https:\/\/www.linkedin.com\/company\/red-iberoamericana-de-expertos-en-salud-en-enfermedades-raras-riberser\/\" target=\"_self\" data-test-app-aware-link=\"\">RIBERSER \u2013 Red Iberoamericana de Expertos en Salud en Enfermedades Raras<\/a> como un modelo t\u00e9cnico de referencia para la cooperaci\u00f3n regional.<\/p>\n<p>La delegaci\u00f3n de ALIBER manifest\u00f3 su disposici\u00f3n a colaborar activamente con RDI en el proceso de elaboraci\u00f3n del\u00a0Plan Global de Enfermedades Raras, aportando desde la regi\u00f3n una perspectiva fundamentada en el conocimiento t\u00e9cnico, la articulaci\u00f3n institucional y la voz organizada del movimiento asociativo.<\/p>\n<p>Esta reuni\u00f3n refuerza el compromiso conjunto por construir pol\u00edticas globales inclusivas y garantizar respuestas m\u00e1s equitativas, sostenidas y alineadas con los derechos de las personas que viven con enfermedades raras.<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-9864 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/uuuu.jpeg\" alt=\"\" width=\"1128\" height=\"1203\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/uuuu.jpeg 1128w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/uuuu-281x300.jpeg 281w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/uuuu-960x1024.jpeg 960w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/uuuu-768x819.jpeg 768w\" sizes=\"(max-width: 1128px) 100vw, 1128px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>En el marco de la 78\u00aa Asamblea Mundial de la Salud, el presidente de ALIBER &#8211; Alianza Iberoamericana de Enfermedades Raras, Juan Carri\u00f3n Tudela y, el secretario de la Junta<a href=\"https:\/\/aliber.org\/web\/2025\/05\/21\/%f0%9d%97%94%f0%9d%97%9f%f0%9d%97%9c%f0%9d%97%95%f0%9d%97%98%f0%9d%97%a5-%f0%9d%97%b3%f0%9d%97%bc%f0%9d%97%bf%f0%9d%98%81%f0%9d%97%ae%f0%9d%97%b9%f0%9d%97%b2%f0%9d%97%b0%f0%9d%97%b2-%f0%9d%98%80\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":1,"featured_media":9864,"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-9863","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\/9863","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=9863"}],"version-history":[{"count":5,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9863\/revisions"}],"predecessor-version":[{"id":9869,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9863\/revisions\/9869"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/9864"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=9863"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=9863"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=9863"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}