{"id":6469,"date":"2026-06-01T12:41:25","date_gmt":"2026-06-01T10:41:25","guid":{"rendered":"https:\/\/f101g.org\/?p=6469"},"modified":"2026-06-17T09:13:39","modified_gmt":"2026-06-17T07:13:39","slug":"aurelien-and-101-genomes-in-la-libre-belgique","status":"publish","type":"post","link":"https:\/\/f101g.org\/en\/aurelien-and-101-genomes-in-la-libre-belgique\/","title":{"rendered":"Aur\u00e9lien and 101 Genomes in La Libre Belgique"},"content":{"rendered":"<p data-pm-slice=\"1 1 []\">Hello,<\/p>\n<p>\ud83d\udd2c Last weekend, the French-language Belgian newspaper  <strong>La Libre Belgique<\/strong>  highlighted the journey of Aur\u00e9lien and the 101 G\u00e9nomes Foundation in an article that deeply moved us and that we would like to share with you.<\/p>\n<p>This article, which tells the story of Aur\u00e9lien and then traces the origins, current status, and future ambitions of 101 G\u00e9nomes, is available <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>to subscribers of the newspaper via this link<\/strong><\/a> or <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 this link for everyone else<\/strong><\/a>.<\/p>\n<p>Our son Aur\u00e9lien has Marfan syndrome, a condition that still leaves many <strong>questions unanswered<\/strong> for families and doctors.<\/p>\n<p>What began as a deeply personal story for our family has become a mission: <strong>to accelerate research<\/strong> and <strong>bring hope<\/strong> to patients with rare genetic diseases and their loved ones.<\/p>\n<p>Through 101 Genomes, we are working to build one of the largest genomic databases dedicated to <strong>understanding the variability of <\/strong>this disease and improving patient care.<\/p>\n<p>To date, more than <strong>230 participants<\/strong> from <strong>around <\/strong>the <strong>world have <\/strong>already shared their <strong>genomic data<\/strong> with 101 Genomes to make it available for research.<\/p>\n<p>Our current goal is to collect <strong>303 genomes<\/strong> from people with Marfan syndrome and<strong>to expand our model to other rare diseases<\/strong>.<\/p>\n<p style=\"text-align: center;\"><span style=\"color: #e51075;\"><em>\u201cWanting to give meaning to Aur\u00e9lien\u2019s story and provide real support to research that struggles to access data, Ludivine and Romain created a model that can be extended to other rare diseases, building on their pilot project focused on Marfan syndrome.\u201d<\/em><\/span><\/p>\n<p>The article that *La Libre Belgique* has dedicated to us is a great opportunity to raise awareness about rare diseases, the importance of data sharing, and the power of collective action in advancing research.<\/p>\n<p>A huge thank you to all the families, researchers, clinicians, partners, and donors who have supported this journey from the very beginning. Every contribution brings us closer to new discoveries and, we hope, a brighter future for generations to come. <\/p>\n<p>Best regards,<\/p>\n<p>Romain and Ludivine<br \/>\nfor 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>Hello, \ud83d\udd2c Last weekend, the French-language Belgian newspaper La Libre Belgique highlighted the journey of Aur\u00e9lien and the 101 G\u00e9nomes &hellip;<\/p>\n","protected":false},"author":2,"featured_media":6462,"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":[172,170,171],"tags":[],"class_list":["post-6469","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-event","category-marfan","category-rare-diseases"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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