{"id":6557,"date":"2026-06-01T12:41:25","date_gmt":"2026-06-01T10:41:25","guid":{"rendered":"https:\/\/f101g.org\/aurelien-en-101-genomes-in-la-libre-belgique\/"},"modified":"2026-06-01T12:41:25","modified_gmt":"2026-06-01T10:41:25","slug":"aurelien-en-101-genomes-in-la-libre-belgique","status":"publish","type":"post","link":"https:\/\/f101g.org\/nl\/aurelien-en-101-genomes-in-la-libre-belgique\/","title":{"rendered":"Aur\u00e9lien en 101 Genomes in La Libre Belgique"},"content":{"rendered":"<p data-pm-slice=\"1 1 []\">Goedendag,<\/p>\n<p>\ud83d\udd2c Afgelopen weekend heeft de Franstalige Belgische krant  <strong>La Libre Belgique<\/strong>  het verhaal van Aur\u00e9lien en 101 Genomes Foundation belicht in een artikel dat ons zeer heeft geraakt en dat wij graag met u willen delen.<\/p>\n<p>Dit artikel, dat het verhaal van Aur\u00e9lien vertelt en vervolgens de oorsprong, de huidige situatie en de toekomstige ambities van 101 Genomes schetst, is toegankelijk <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>voor abonnees van de krant via deze link<\/strong><\/a> of <a tabindex=\"-1\" href=\"https:\/\/f101g.org\/wp-content\/uploads\/2026\/05\/20260524-LLB_23052026_LLB_LIBRE_024.pdf\" target=\"_blank\" rel=\"noopener\"><strong>via deze link voor anderen<\/strong><\/a>.<\/p>\n<p>Onze zoon Aur\u00e9lien lijdt aan het syndroom van Marfan, een ziekte die nog steeds veel <strong>vragen onbeantwoord<\/strong> laat voor families en artsen.<\/p>\n<p>Wat begon als een diep persoonlijk verhaal voor onze familie, is een missie geworden: <strong>onderzoek versnellen<\/strong> en <strong>hoop brengen<\/strong> aan pati\u00ebnten met zeldzame genetische aandoeningen en hun naasten.<\/p>\n<p>Met 101 Genomes werken wij aan de opbouw van \u00e9\u00e9n van de belangrijkste genomische databanken die gewijd zijn aan het <strong>begrijpen van de variabiliteit<\/strong> van deze ziekte en aan de verbetering van de pati\u00ebntenzorg.<\/p>\n<p>Tot op heden hebben meer dan <strong>230 deelnemers<\/strong> uit de <strong>hele wereld<\/strong> hun <strong>genomische gegevens<\/strong> aan 101 Genomes toevertrouwd om deze ter beschikking te stellen van het onderzoek.<\/p>\n<p>Wij hebben nu de ambitie om <strong>303 genomen<\/strong> te verzamelen van personen met het syndroom van Marfan en ons <strong>model uit te breiden naar andere zeldzame ziekten<\/strong>.<\/p>\n<p style=\"text-align: center;\"><span style=\"color: #e51075;\">\u201c<em>Om betekenis te geven aan het verhaal van Aur\u00e9lien en echte steun te bieden aan onderzoek dat moeite heeft om toegang te krijgen tot gegevens, hebben Ludivine en Romain een model ontwikkeld dat kan worden uitgebreid naar andere zeldzame ziekten, voortbouwend op hun pilotproject dat is gewijd aan het Marfan-syndroom<\/em>\u201d<\/span><\/p>\n<p>Het artikel dat La Libre Belgique aan ons wijdt, is een mooie gelegenheid om meer bewustzijn te cre\u00ebren over zeldzame ziekten, het belang van het delen van gegevens en de kracht van het collectief om het onderzoek vooruit te helpen.<\/p>\n<p>Een enorme dank aan alle families, onderzoekers, clinici, partners en donateurs die dit avontuur vanaf het begin steunen. Elke bijdrage brengt ons dichter bij nieuwe ontdekkingen en, zo hopen wij, betere perspectieven voor toekomstige generaties. <\/p>\n<p>Vriendelijke groeten,<\/p>\n<p>Romain en Ludivine<br \/>\nvoor 101 Genomes<\/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>Goedendag, \ud83d\udd2c Afgelopen weekend heeft de Franstalige Belgische krant La Libre Belgique het verhaal van Aur\u00e9lien en 101 Genomes Foundation &hellip;<\/p>\n","protected":false},"author":2,"featured_media":6558,"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":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[177,179,178],"tags":[],"class_list":["post-6557","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-evenement","category-marfan","category-zeldzame-ziekten"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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