{"id":11336,"date":"2024-02-14T18:02:54","date_gmt":"2024-02-14T17:02:54","guid":{"rendered":"https:\/\/www.lafresca.fm\/?p=11336"},"modified":"2024-02-14T18:02:56","modified_gmt":"2024-02-14T17:02:56","slug":"la-ibense-fide-miron-se-reune-con-la-reina-letizia-representando-a-la-federacion-de-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/www.lafresca.fm\/la-ibense-fide-miron-se-reune-con-la-reina-letizia-representando-a-la-federacion-de-enfermedades-raras\/","title":{"rendered":"La ibense Fide Mir\u00f3n se re\u00fane con la Reina Letizia representando a la Federaci\u00f3n de Enfermedades Raras"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Su Majestad la Reina se re\u00fane con la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras, FEDER, para conocer las oportunidades para investigar, diagnosticar y tratar las enfermedades raras este 2024<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para conocer el presente y futuro de las personas con enfermedades raras (ER) o que est\u00e1n en busca de diagn\u00f3stico en Espa\u00f1a, Do\u00f1a Letizia se re\u00fane anualmente y desde 2013 con la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1170\" height=\"1170\" src=\"https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1-1170x1170.jpg\" alt=\"\" class=\"wp-image-11337\" srcset=\"https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1-1170x1170.jpg 1170w, https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1-770x770.jpg 770w, https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1-150x150.jpg 150w, https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1-768x768.jpg 768w, https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1-100x100.jpg 100w, https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1-370x370.jpg 370w, https:\/\/www.lafresca.fm\/f-solosog\/2024\/02\/fide-1.jpg 1440w\" sizes=\"(max-width: 1170px) 100vw, 1170px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">El a\u00f1o 2023 destac\u00f3, entre otros, por \u00abla intervenci\u00f3n, por primera <a><\/a>vez, de FEDER ante la ONU o las Conferencias sobre ER celebradas al hilo de la Presidencia espa\u00f1ola del Consejo de la Uni\u00f3n Europea\u00bb en palabras de Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El desarrollo de pol\u00edticas internacionales es una prioridad porque \u00abtodas impactan en nuestro pa\u00eds\u00bb ha explicado Isabel Motero, Directora General de FEDER y su Fundaci\u00f3n, quien ha se\u00f1alado que, desde Espa\u00f1a, \u00abnuestro objetivo es motivar la actualizaci\u00f3n de la Estrategia de Enfermedades Raras y su implantaci\u00f3n a nivel homog\u00e9neo en todas las Comunidades\u00bb.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En este espacio, la familia FEDER ha estado representada por Juan Carri\u00f3n, Presidente, Fide Mir\u00f3n, Vicepresidenta, Santiago de la Riva, Tesorero, y los vocales de la Junta Directiva David S\u00e1nchez, Daniel de Vicente, y M\u00f3nica Rodriguez. 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