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by François Deprez
L’identité de chacun se retrouve à l’échelle infinitésimale. Prenant si peu de place, elle est pourtant si difficile à cerner. Ludivine et Romain, par leur amour pour leur fils Aurélien, diagnostiqué avec le syndrome de Marfan, soutenus par la communauté scientifique et médicale, ont décidé d’entreprendre le déchiffrage séquence par séquence du génome pour aider non seulement leur fils mais aussi toutes les personnes atteintes de maladies encore peu connues aujourd’hui.
Je soutiens ce projet de tout mon cœur, parce que d’une part Ludivine et Romain sont des amis très proches, et parce que d’autre part décoder le génome dans son intégralité permettra d’améliorer la compréhension des maladies d’aujourd’hui, de les guérir et prévenir les maladies des générations futures.
Si chacun d’entre nous fait un petit don (déductible d’impôt), je suis convaincu que la science et l’espoir pourront avancer d’un grand pas. Qu’en pensez-vous ?
— François
The Fondation 101 Génomes (F101G) is a patient-led initiative that aims to boost groundbreaking research in the field of rare diseases. F101G is hosted by the Fondation Roi Baudoin.
Our goal is to advance the understanding of the human genome to better treat rare diseases affecting children. We want to accelerate discoveries into new diagnostics tools and more efficient treatments.
To this aim, F101G is set to create a unique bioinformatic database that will unleash the full potential of genomics and artificial intelligence.
Our crowdfunding campaign “Impatient” wants to accelerate funding for research. We are “Impatient” because, when it comes to saving lives and improving the quality of life of people with a rare disease, there is no time to waste.
Gifts worth over 40 EUR are fiscally deductible.
Your money will help to support F101G’s pilot project, focused on Marfan Syndrome. Marfan Syndrome is a rare genetic connective tissue disorder affecting 1 in 5000 people. It’s a serious condition, which can be potentially life-threatening without an early diagnosis and medical treatment.
The pilot project aims to create a bioinformatic database crossing genotypic (Whole Genome Sequencing) data and detailed phenotypic (clinical) data from a cohort of patients holding the exact same mutation in FBN-1 gene. The ultimate aim is to understand the extreme variability in the symptoms of Marfan patients.
World-class medical scientists will have open access to this database. They will be able to launch algorithms designed to understand why some people display severe symptoms while others are only mildly affected by the mutation causing Marfan Syndrome. This discovery will allow scientists to develop accurate diagnostic tools and personalised treatments and cures for Marfan patients.
The project has galvinized support from the international scientific community. F101G’s scientific committee is formed by scientists from Antwerp University, UZ Gent, Erasme Hospital, Nijmegen, and Bichat Hospital.
Don de Marie-Laurence Deprez. Vers l’infini et au-delà ! (Buzz)
De la part de Gérard Deprez. Continuez comme ça et meilleurs vœux !
Merci pour cette action utile et pour votre engagement!
À l’attaque !
Merci pour cette belle initiative.
Go ahead! Raising funds for a good cause is easy
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