{"id":4245,"date":"2019-02-20T20:36:55","date_gmt":"2019-02-20T19:36:55","guid":{"rendered":"https:\/\/f101g.org\/deelname-van-de-f101g-aan-de-lancering-van-de-global-commission-consortium-takeda-eurordis-en-microsoft\/"},"modified":"2019-02-20T20:36:55","modified_gmt":"2019-02-20T19:36:55","slug":"deelname-van-de-f101g-aan-de-lancering-van-de-global-commission-consortium-takeda-eurordis-en-microsoft","status":"publish","type":"post","link":"https:\/\/f101g.org\/nl\/deelname-van-de-f101g-aan-de-lancering-van-de-global-commission-consortium-takeda-eurordis-en-microsoft\/","title":{"rendered":"Deelname van de F101G aan de lancering van de \u201eGlobal Commission\u201d (Consortium Takeda, Eurordis en Microsoft)"},"content":{"rendered":"<p style=\"text-align: justify;\"><em>Op 20 februari 2019 hielden Eurordis, Microsoft en Takeda gezamenlijk de duplexlancering van de Global Commission in Brussel en New York. De Global Commission wil de diagnostische odyssee van pati\u00ebnten met zeldzame ziekten verkorten.<\/em><\/p>\n<p style=\"text-align: justify;\">Op het evenement was Romain uitgenodigd om te vertellen over de odyssee die ertoe leidde dat bij zijn zoontje een <em>de novo<\/em> neonatale vorm van het Marfansyndroom werd vastgesteld.<\/p>\n<p style=\"text-align: justify;\">Hij benadrukte het vitale belang van het zo snel mogelijk verkrijgen van een geschikte diagnose in de context van zeldzame ziekten. Evenals de sociale gevolgen van deze aankondiging.<\/p>\n<p style=\"text-align: justify;\">Romain sprak over het belang van de huidige genomics-revolutie en de vooruitzichten die deze biedt op het gebied van zowel diagnostiek als onderzoek. In deze context had hij de gelegenheid om het werk van de F101G en het 101 Genomes Project gewijd aan het Marfan syndroom te presenteren.<\/p>\n<p>Voor meer informatie over dit initiatief&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>Op 20 februari 2019 hielden Eurordis, Microsoft en Takeda gezamenlijk de duplexlancering van de Global Commission in Brussel en New &hellip;<\/p>\n","protected":false},"author":3,"featured_media":2769,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_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}},"categories":[],"tags":[81,82,85],"class_list":["post-4245","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","tag-marfan-nl","tag-patient-nl","tag-wetenschapper"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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