{"id":4293,"date":"2019-03-27T08:57:47","date_gmt":"2019-03-27T08:57:47","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/03\/27\/s-m-la-reina-la-primera-dama-de-argentina-y-la-ministra-de-desarrollo-social-reciben-a-aliber\/"},"modified":"2019-03-27T08:57:47","modified_gmt":"2019-03-27T08:57:47","slug":"s-m-la-reina-la-primera-dama-de-argentina-y-la-ministra-de-desarrollo-social-reciben-a-aliber","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/03\/27\/s-m-la-reina-la-primera-dama-de-argentina-y-la-ministra-de-desarrollo-social-reciben-a-aliber\/","title":{"rendered":"S.M. La Reina, la Primera Dama de Argentina y la Ministra de Desarrollo Social, reciben a ALIBER"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>Fuente: <span style=\"text-decoration: underline\"><a href=\"http:\/\/aliber.org\/web\/2019\/03\/27\/s-m-la-reina-juliana-awada-primera-dama-de-argentina-y-carolina-stanley-minstra-de-desarrollo-social-recibieron-a-la-junta-directiva-de-aliber\/\" target=\"_blank\" rel=\"noopener noreferrer\">ALIBER<\/a><\/span> |&nbsp;Su Majestad la Reina Letizia, Juliana Awada, Primera Dama de Argentina y Carolina Stanley Ministra de Desarrollo Social, se reunieron con la Junta Directiva de la Alianza Iberoamericana de Enfermedades Raras (ALIBER) y de la Federaci\u00f3n Argentina de Enfermedades Poco Frecuentes (FADEPOF), en la ciudad de Buenos Aires.<\/p>\n<p>La reuni\u00f3n se realiz\u00f3 como parte de la agenda de trabajo de D\u00f1a. Letizia, en el marco del viaje que S.M. Los Reyes realizan a Argentina. En la actividad participaron en representaci\u00f3n de ALIBER Juan Carri\u00f3n (Espa\u00f1a), In\u00e9s Castellano (Argentina), Luz Victoria Salazar (Colombia), Martha Gimenez (Uruguay), Deolinda Acosta de Mart\u00ednez (Paraguay) y Karla Ruiz de Castilla (Per\u00fa).<\/p>\n<p>Durante la reuni\u00f3n, D\u00f1a. Letizia, D\u00f1a. Juliana y D\u00f1a. Carolina, conocieron el estado de situaci\u00f3n de las personas que viven con una enfermedad poco frecuente en Iberoam\u00e9rica, cifra que se estima en 46 millones de personas. De igual modo, la oportunidad fue propicia para compartir los proyectos que ALIBER est\u00e1 desarrollando este a\u00f1o como lo son el Estudio de Necesidades Socio-Sanitarias de las personas con enfermedades raras y sus familias en Latinoam\u00e9rica y el Servicio Iberoamericano de Informaci\u00f3n y Orientaci\u00f3n sobre Enfermedades Raras.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 27\/03\/2019.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12029-s-m-la-reina,-la-primera-dama-de-argentina-y-la-ministra-de-desarrollo-social,-reciben-a-aliber\" target=\"_blank\" rel=\"noopener noreferrer\">S.M. La Reina, la Primera Dama de Argentina y la Ministra de Desarrollo Social, reciben a ALIBER<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: ALIBER |&nbsp;Su Majestad la Reina Letizia, Juliana Awada, Primera Dama de Argentina y Carolina Stanley Ministra de Desarrollo Social, se reunieron con la Junta Directiva de la Alianza Iberoamericana de Enfermedades Raras (ALIBER) y de la Federaci\u00f3n Argentina de Enfermedades Poco Frecuentes [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4293","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>S.M. 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