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Et si on faisait un cadeau à la recherche pour Noël?
by Masha Vander Kelen
100€ raised
Goal 1000 €
En cette période de fêtes et de cadeaux, pourquoi ne pas en faire un pour la recherche?
La fondation créée pour le cousin de mes fils, Aurélien (4 ans), atteint d’une maladie rare, en aurait besoin.
Loin de la résignation, les parents d’Aurélien se sont mobilisés d’une manière admirable pour faire avancer la recherche de 10 ans, en créant la fondation « 101 génomes ».
L’objectif est de créer une immense base de données permettant aux chercheurs de mieux comprendre le génome et donc de soigner les maladies rares.
Les parents d’Aurélien, directement concernés, sont évidemment très motivés, mais leur action est utile à beaucoup d’autres. Je pense aussi qu’il n’y a que la solidarité et l’empathie qui adoucissent et réchauffent les moments moins faciles. Leur démarche est belle et noble, j’ai envie de les soutenir. Et vous?
— Masha
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.
Donations (2)
2 magic donors are supporting "Et si on faisait un cadeau à la recherche pour Noël?"
50 €
Catherine
— 4 years ago
Et si on faisait un cadeau à la recherche pour Pâques ? De tout cœur avec vous !
50 €
Masha
— 4 years ago
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That's fantastic ! Your donation makes a difference !
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