{"id":9716,"date":"2025-05-07T21:13:07","date_gmt":"2025-05-07T19:13:07","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=9716"},"modified":"2025-05-07T21:13:38","modified_gmt":"2025-05-07T19:13:38","slug":"9716","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/05\/07\/9716\/","title":{"rendered":"Reuni\u00f3n Ministerial en Montevideo refuerza la cooperaci\u00f3n iberoamericana frente a las enfermedades raras"},"content":{"rendered":"

En el marco de la \ud835\udde5\ud835\uddf2\ud835\ude02\ud835\uddfb\ud835\uddf6\ud835\uddfc\ud835\uddfb \ud835\udde0\ud835\uddf6\ud835\uddfb\ud835\uddf6\ud835\ude00\ud835\ude01\ud835\uddf2\ud835\uddff\ud835\uddf6\ud835\uddee\ud835\uddf9 \ud835\ude00\ud835\uddfc\ud835\uddef\ud835\uddff\ud835\uddf2 \ud835\uddf2\ud835\uddf9 \ud835\uddd9\ud835\ude02\ud835\ude01\ud835\ude02\ud835\uddff\ud835\uddfc \ud835\uddf1\ud835\uddf2 \ud835\uddf9\ud835\uddee\ud835\ude00 \ud835\udde3\ud835\uddfc\ud835\uddf9\u00ed\ud835\ude01\ud835\uddf6\ud835\uddf0\ud835\uddee\ud835\ude00 \ud835\uddf1\ud835\uddf2 \ud835\udde6\ud835\uddee\ud835\uddf9\ud835\ude02\ud835\uddf1 \ud835\uddf2\ud835\uddfb \ud835\uddd8\ud835\uddfb\ud835\uddf3\ud835\uddf2\ud835\uddff\ud835\uddfa\ud835\uddf2\ud835\uddf1\ud835\uddee\ud835\uddf1\ud835\uddf2\ud835\ude00 \ud835\udde5\ud835\uddee\ud835\uddff\ud835\uddee\ud835\ude00, organizada por RIBERSER \u2013 Red Iberoamericana de Expertos en Salud en Enfermedades Raras<\/a> y la AGENCIA ESPA\u00d1OLA DE COOPERACION INTERNACIONAL PARA EL DESARROLLO – AECID<\/a> se\u00a0convoc\u00f3 una destacada\u00a0Mesa Redonda de Autoridades de Salud, que reuni\u00f3 a representantes gubernamentales de alto nivel para fortalecer el di\u00e1logo pol\u00edtico y t\u00e9cnico en torno a los desaf\u00edos de las enfermedades raras en la regi\u00f3n.<\/p>\n

La sesi\u00f3n fue moderada por Juan Carri\u00f3n Tudela<\/a>, Presidente de ALIBER – Alianza Iberoamericana de Enfermedades Raras<\/a> , y cont\u00f3 con la participaci\u00f3n de:<\/p>\n

– Dr. Manuel Zambrano, Viceministro, Ministerio de Salud de Panam\u00e1<\/a>
\n– Dra. Mar\u00eda R. Fern\u00e1ndez Garc\u00eda, Subdirectora General del Ministerio de Sanidad<\/a> de Espa\u00f1a.
\n– Dra. Mariela Larrandaburu, Coordinadora del Programa de Enfermedades Raras y Anomal\u00edas Cong\u00e9nitas del Ministerio de Salud P\u00fablica – Uruguay <\/a><\/p>\n

Durante sus intervenciones, los representantes coincidieron en la necesidad de consolidar una\u00a0cooperaci\u00f3n regional efectiva, basada en la articulaci\u00f3n entre pol\u00edticas p\u00fablicas, ciencia y participaci\u00f3n ciudadana a trav\u00e9s del movimiento asociativo vinculado con las enfermedades raras.<\/p>\n

El Dr. Manuel Zambrano resalt\u00f3 la importancia de generar visibilidad y compromiso pol\u00edtico real con las enfermedades raras, destacando que no se trata solo de marcos regulatorios, sino de acciones concretas que lleguen a las personas.<\/p>\n

La Dra. Fern\u00e1ndez Garc\u00eda puso en valor la Resoluci\u00f3n de Naciones Unidas sobre Enfermedades Raras y comparti\u00f3 avances en la actualizaci\u00f3n de la Estrategia Nacional Espa\u00f1ola, subrayando la colaboraci\u00f3n entre el \u00e1mbito pol\u00edtico, social y cient\u00edfico.<\/p>\n

Desde Uruguay, la Dra. Larrandaburu present\u00f3 un enfoque integral e innovador para el abordaje de enfermedades poco frecuentes, resaltando la experiencia exitosa del pa\u00eds a trav\u00e9s de su registro nacional de defectos cong\u00e9nitos y de ER.<\/p>\n

Como cierre, Juan Carri\u00f3n destac\u00f3 el papel del movimiento asociativo iberoamericano y de ALIBER como plataforma regional de cooperaci\u00f3n entre pa\u00edses, reconociendo que los avances duraderos en salud p\u00fablica requieren la voz activa de los pacientes.<\/p>\n

La reuni\u00f3n dej\u00f3 un mensaje com\u00fan: la transformaci\u00f3n de los sistemas de salud solo ser\u00e1 posible mediante la acci\u00f3n coordinada entre gobiernos, redes t\u00e9cnicas y organizaciones de pacientes.<\/p>\n

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 <\/p>\n","protected":false},"excerpt":{"rendered":"

En el marco de la \ud835\udde5\ud835\uddf2\ud835\ude02\ud835\uddfb\ud835\uddf6\ud835\uddfc\ud835\uddfb \ud835\udde0\ud835\uddf6\ud835\uddfb\ud835\uddf6\ud835\ude00\ud835\ude01\ud835\uddf2\ud835\uddff\ud835\uddf6\ud835\uddee\ud835\uddf9 \ud835\ude00\ud835\uddfc\ud835\uddef\ud835\uddff\ud835\uddf2 \ud835\uddf2\ud835\uddf9 \ud835\uddd9\ud835\ude02\ud835\ude01\ud835\ude02\ud835\uddff\ud835\uddfc \ud835\uddf1\ud835\uddf2 \ud835\uddf9\ud835\uddee\ud835\ude00 \ud835\udde3\ud835\uddfc\ud835\uddf9\u00ed\ud835\ude01\ud835\uddf6\ud835\uddf0\ud835\uddee\ud835\ude00 \ud835\uddf1\ud835\uddf2 \ud835\udde6\ud835\uddee\ud835\uddf9\ud835\ude02\ud835\uddf1 \ud835\uddf2\ud835\uddfb \ud835\uddd8\ud835\uddfb\ud835\uddf3\ud835\uddf2\ud835\uddff\ud835\uddfa\ud835\uddf2\ud835\uddf1\ud835\uddee\ud835\uddf1\ud835\uddf2\ud835\ude00 \ud835\udde5\ud835\uddee\ud835\uddff\ud835\uddee\ud835\ude00, organizada por RIBERSER \u2013 Red Iberoamericana de Expertos en Salud en Enfermedades[…]<\/a><\/p>\n","protected":false},"author":1,"featured_media":9714,"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-9716","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\/9716","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=9716"}],"version-history":[{"count":2,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9716\/revisions"}],"predecessor-version":[{"id":9721,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9716\/revisions\/9721"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/9714"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=9716"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=9716"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=9716"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}