{"id":6872,"date":"2026-06-01T12:41:25","date_gmt":"2026-06-01T10:41:25","guid":{"rendered":"https:\/\/f101g.org\/aurelien-y-101-genomes-en-la-libre-belgique\/"},"modified":"2026-06-01T12:41:25","modified_gmt":"2026-06-01T10:41:25","slug":"aurelien-y-101-genomes-en-la-libre-belgique","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/aurelien-y-101-genomes-en-la-libre-belgique\/","title":{"rendered":"Aur\u00e9lien y 101 G\u00e9nomes en La Libre Belgique"},"content":{"rendered":"<p data-pm-slice=\"1 1 []\">Buenos d\u00edas:<\/p>\n<p>\ud83d\udd2c El pasado fin de semana, el diario belga franc\u00f3fono  <strong>La Libre Belgique<\/strong>  destac\u00f3 la trayectoria de Aur\u00e9lien y de la 101 G\u00e9nomes Foundation en un art\u00edculo que nos ha conmovido profundamente y que deseamos compartir con usted.<\/p>\n<p>Este art\u00edculo, que relata la historia de Aur\u00e9lien y recorre el origen, la situaci\u00f3n actual y las ambiciones futuras de 101 G\u00e9nomes, est\u00e1 disponible <a tabindex=\"-1\" href=\"https:\/\/www.lalibre.be\/planete\/sante\/2026\/05\/24\/tres-vite-les-parents-daurelien-remarquent-quil-y-a-chez-leur-fils-quelque-chose-qui-cloche-sensuivra-un-formidable-projet-UO4G6K5HPZERLF36CJBZ7K2WUE\/\" target=\"_blank\" rel=\"noopener\"><strong>para los suscriptores del diario a trav\u00e9s de este enlace<\/strong><\/a> o <a tabindex=\"-1\" href=\"https:\/\/f101g.org\/wp-content\/uploads\/2026\/05\/20260524-LLB_23052026_LLB_LIBRE_024.pdf\" target=\"_blank\" rel=\"noopener\"><strong>a trav\u00e9s de este enlace para los dem\u00e1s lectores<\/strong><\/a>.<\/p>\n<p>Nuestro hijo Aur\u00e9lien padece el s\u00edndrome de Marfan, una enfermedad que todav\u00eda deja muchas <strong>preguntas sin respuesta<\/strong> para las familias y los m\u00e9dicos.<\/p>\n<p>Lo que comenz\u00f3 como una historia profundamente personal para nuestra familia se ha convertido en una misi\u00f3n: <strong>acelerar la investigaci\u00f3n<\/strong> y <strong>brindar esperanza<\/strong> a los pacientes afectados por enfermedades gen\u00e9ticas raras y a sus seres queridos.<\/p>\n<p>Con 101 G\u00e9nomes, trabajamos para constituir una de las bases de datos gen\u00f3micos m\u00e1s importantes dedicadas a la <strong>comprensi\u00f3n de la variabilidad<\/strong> de esta enfermedad y a la mejora de la atenci\u00f3n a los pacientes.<\/p>\n<p>A d\u00eda de hoy, m\u00e1s de <strong>230 participantes<\/strong> procedentes de <strong>todo el mundo<\/strong> ya han confiado sus <strong>datos gen\u00f3micos<\/strong> a 101 G\u00e9nomes para ponerlos a disposici\u00f3n de la investigaci\u00f3n.<\/p>\n<p>Nuestra ambici\u00f3n actual es recolectar <strong>303 genomas<\/strong> de personas con s\u00edndrome de Marfan y <strong>extender nuestro modelo a otras enfermedades raras<\/strong>.<\/p>\n<p style=\"text-align: center;\"><span style=\"color: #e51075;\">\u201c<em>Con el deseo de dar sentido a la historia de Aur\u00e9lien y aportar un apoyo real a la investigaci\u00f3n que tiene dificultades para acceder a los datos, Ludivine y Romain han creado un modelo que puede extenderse a otras enfermedades raras bas\u00e1ndose en su proyecto piloto dedicado al s\u00edndrome de Marfan<\/em>\u201d<\/span><\/p>\n<p>El art\u00edculo que La Libre Belgique nos dedica es una excelente oportunidad para sensibilizar a\u00fan m\u00e1s sobre las enfermedades raras, la importancia de compartir datos y la fuerza del colectivo para hacer avanzar la investigaci\u00f3n.<\/p>\n<p>Un inmenso agradecimiento a todas las familias, investigadores, cl\u00ednicos, socios y donantes que apoyan esta aventura desde el principio. Cada contribuci\u00f3n nos acerca a nuevos descubrimientos y, as\u00ed lo esperamos, a mejores perspectivas para las generaciones futuras. <\/p>\n<p>Saludos cordiales,<\/p>\n<p>Romain y Ludivine<br \/>\npara 101 G\u00e9nomes<\/p>\n<p><a href=\"https:\/\/f101g.org\/wp-content\/uploads\/2026\/05\/20260524-LLB_23052026_LLB_LIBRE_024.pdf\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-6463 aligncenter\" src=\"https:\/\/f101g.org\/wp-content\/uploads\/2026\/06\/20260524-LLB-Aurelien-et-101-Genomes-420x286.png\" alt=\"\" width=\"750\" height=\"511\" srcset=\"https:\/\/f101g.org\/wp-content\/uploads\/2026\/06\/20260524-LLB-Aurelien-et-101-Genomes-420x286.png 420w, https:\/\/f101g.org\/wp-content\/uploads\/2026\/06\/20260524-LLB-Aurelien-et-101-Genomes-768x523.png 768w, https:\/\/f101g.org\/wp-content\/uploads\/2026\/06\/20260524-LLB-Aurelien-et-101-Genomes.png 1333w\" sizes=\"auto, (max-width: 750px) 100vw, 750px\" \/><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Buenos d\u00edas: \ud83d\udd2c El pasado fin de semana, el diario belga franc\u00f3fono La Libre Belgique destac\u00f3 la trayectoria de Aur\u00e9lien &hellip;<\/p>\n","protected":false},"author":2,"featured_media":6873,"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":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[185,187,186],"tags":[],"class_list":["post-6872","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-raras","category-evento","category-marfan"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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