(lievesam.weebly.<\/a>com) en via onze blog kwamen we in contact met Romain en Ludivine en de 101 Genomes Foundation. Ze doen fantastisch werk en we staan volledig achter het 101 Marfan-genomen project. Er is momenteel geen behandeling voor het Marfan syndroom en daarom is goed onderzoek zo belangrijk.<\/p>\nDankzij onze blog hebben we andere ouders ontmoet van kinderen met neonataal Marfan syndroom die veel ouder zijn dan twee. We hebben ook ontdekt dat er grote verschillen zijn in de manier waarop de ziekte zich manifesteert en in de symptomen waaraan kinderen lijden.<\/p>\n
Het 101 Marfan-genomen project heeft als doel deze verschillen te bestuderen en te proberen ze te verklaren. Met dit project hopen we behandelingen te ontwikkelen die van levensbelang kunnen zijn voor Sam, Aur\u00e9lien en andere kinderen met het Marfan syndroom.<\/u>.<\/p>\n
Sam onderging deze zomer zijn eerste hartoperatie. De toekomst blijft onzeker en spannend. We hopen dat medisch onderzoek zich zal blijven ontwikkelen en we geloven dat dit project daar een belangrijke bijdrage aan kan leveren.<\/p>\n","protected":false},"excerpt":{"rendered":"
Waarom steunt u het 101 Genomes Marfan-project? Mijn naam is Dessie Lividikou en ik ben de moeder van Sam. Toen …<\/p>\n","protected":false},"author":3,"featured_media":2734,"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],"class_list":["post-4199","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","tag-marfan-nl","tag-patient-nl"],"acf":[],"yoast_head":"\n
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