{"id":2516,"date":"2023-06-08T18:50:55","date_gmt":"2023-06-08T16:50:55","guid":{"rendered":"https:\/\/f101g.org\/conferencia-i%c2%b3h-acceso-de-los-pacientes-a-la-innovacion-lecciones-de-las-enfermedades-raras\/"},"modified":"2025-12-05T11:25:22","modified_gmt":"2025-12-05T10:25:22","slug":"conferencia-i%c2%b3h-acceso-de-los-pacientes-a-la-innovacion-lecciones-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/conferencia-i%c2%b3h-acceso-de-los-pacientes-a-la-innovacion-lecciones-de-las-enfermedades-raras\/","title":{"rendered":"Conferencia I\u00b3H: Acceso de los pacientes a la innovaci\u00f3n: lecciones de las enfermedades raras"},"content":{"rendered":"<p>El 31 de marzo de 2023, Ludivine fue invitada por el profesor Michel Goldman a explicar el trabajo de 101 Genomas en la conferencia <em>\u00abPatient Access to Innovation: Learning from Rare diseases<\/em> \u00ab.<\/p>\n<p>La conferencia fue organizada en el Palacio de las Academias por el<em>Instituto de Innovaci\u00f3n Interdisciplinaria en el \u00c1mbito Sanitario<\/em> (I\u00b3h), la Fundaci\u00f3n M\u00e9dicaments et Soci\u00e9t\u00e9 y la <em>Escuela de Econom\u00eda y Gesti\u00f3n Solvay de Bruselas<\/em>.<\/p>\n<p>Ludivine habl\u00f3 por la tarde sobre el tema <em>\u00abLos pacientes como socios en la investigaci\u00f3n<\/em> \u00ab. Aprovech\u00f3 la ocasi\u00f3n para explicar los progresos realizados por 101 Genomes, cuya Nube Gen\u00f3mica ya est\u00e1 operativa y alberga m\u00e1s de 70 genomas de pacientes de Marfan, lo que permite a los investigadores iniciar la b\u00fasqueda de genes protectores.<\/p>\n<p>Al final del d\u00eda, Ludivine particip\u00f3 en una mesa redonda con el profesor Guillaume Canaud, Jo De Cock, Mathias Dewatripont y Magda Chlebus sobre la accesibilidad de los medicamentos y la <em>reutilizaci\u00f3n de f\u00e1rmacos<\/em> para enfermedades raras.<\/p>\n<p>Este panel sigui\u00f3 a la apasionante conferencia<em>\u00abDe un solo paciente a la innovaci\u00f3n terap\u00e9utica para un trastorno malformativo gen\u00e9tico<\/em>\u00bb de Guillaume Canaud, que explic\u00f3 c\u00f3mo descubri\u00f3 un nuevo medicamento revolucionario para tratar a las personas con s\u00edndrome de Clove.<\/p>\n<p>Vea los v\u00eddeos de la <a href=\"https:\/\/www.youtube.com\/watch?v=XFUkJ6ZZ7B8\" target=\"_blank\" rel=\"noopener\">conferencia de Ludivine<\/a> y de la <a href=\"https:\/\/www.youtube.com\/watch?v=mNdVUcH9TqQ\" target=\"_blank\" rel=\"noopener\">mesa redonda<\/a><\/p>\n<div class=\"wp-block-pdfemb-pdf-embedder-viewer\"><a href=\"https:\/\/f101g.org\/wp-content\/uploads\/2023\/06\/20230330-IH3-Symposium-Schedule-1.pdf\" class=\"pdfemb-viewer\" style=\"\" data-width=\"max\" data-height=\"max\" data-toolbar=\"bottom\" data-toolbar-fixed=\"off\">20230330 Programa del Simposio IH3<\/a><\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El 31 de marzo de 2023, Ludivine fue invitada por el profesor Michel Goldman a explicar el trabajo de 101 &hellip;<\/p>\n","protected":false},"author":3,"featured_media":4048,"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":[138],"tags":[139],"class_list":["post-2516","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-digital","tag-conferencia"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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