{"id":4238,"date":"2019-02-20T20:36:55","date_gmt":"2019-02-20T19:36:55","guid":{"rendered":"https:\/\/f101g.org\/participacion-de-la-f101g-en-el-lanzamiento-de-la-comision-global-consorcio-takeda-eurordis-y-microsoft\/"},"modified":"2019-02-20T20:36:55","modified_gmt":"2019-02-20T19:36:55","slug":"participacion-de-la-f101g-en-el-lanzamiento-de-la-comision-global-consorcio-takeda-eurordis-y-microsoft","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/participacion-de-la-f101g-en-el-lanzamiento-de-la-comision-global-consorcio-takeda-eurordis-y-microsoft\/","title":{"rendered":"Participaci\u00f3n de la F101G en el lanzamiento de la \u00abComisi\u00f3n Global\u00bb (Consorcio Takeda, Eurordis y Microsoft)"},"content":{"rendered":"<p style=\"text-align: justify;\"><em>El 20 de febrero de 2019, Eurordis, Microsoft y Takeda celebraron conjuntamente el lanzamiento d\u00faplex de la Comisi\u00f3n Global en Bruselas y Nueva York. La Comisi\u00f3n Global pretende acortar la odisea diagn\u00f3stica de los pacientes con enfermedades raras.<\/em><\/p>\n<p style=\"text-align: justify;\">En el acto, Romain fue invitado a hablar de la odisea que supuso que a su peque\u00f1o le diagnosticaran una forma neonatal <em>de novo<\/em> del s\u00edndrome de Marfan.<\/p>\n<p style=\"text-align: justify;\">Subray\u00f3 la importancia vital de obtener un diagn\u00f3stico adecuado lo antes posible en el contexto de las enfermedades raras. As\u00ed como las consecuencias sociales de este anuncio.<\/p>\n<p style=\"text-align: justify;\">Romain habl\u00f3 de la importancia de la revoluci\u00f3n gen\u00f3mica en curso y de las perspectivas que ofrece tanto en t\u00e9rminos de diagn\u00f3stico como de investigaci\u00f3n. En este contexto, tuvo ocasi\u00f3n de presentar los trabajos del F101G y del Proyecto 101 Genomas dedicados al s\u00edndrome de Marfan.<\/p>\n<p>Para m\u00e1s informaci\u00f3n sobre esta iniciativa&nbsp;: https: <a href=\"https:\/\/www.globalrarediseasecommission.com\/AboutUs\">\/\/www.globalrarediseasecommission.com\/AboutUs<\/a><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-1199\" src=\"https:\/\/f101g.org\/wp-content\/uploads\/2019\/02\/20190221-Global-commission-image-1.png\" alt=\"\" width=\"658\" height=\"805\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El 20 de febrero de 2019, Eurordis, Microsoft y Takeda celebraron conjuntamente el lanzamiento d\u00faplex de la Comisi\u00f3n Global en &hellip;<\/p>\n","protected":false},"author":3,"featured_media":2773,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[],"tags":[104,101,102],"class_list":["post-4238","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","tag-cientifico","tag-marfan-es","tag-paciente"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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