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A la recherche du SUPERGÈNE
by Pierre de Surgères
300€ raised
Goal 400 €
Je voudrais vous inciter à soutenir la Fondation 101 Génomes, et sa démarche originale pour faire avancer la recherche sur les maladies rares.
Après avoir été diagnostiqué, le patient pourrait attendre dans son fauteuil que la recherche avance si possible plus vite que la maladie. C'est comme ça que nous avons toujours fait.
Ici, quelque chose de nouveau se passe : des patients et leurs proches se mobilisent pour fournir un outil à la communauté scientifique, et donner leur génome à la science.
Pour cela nous avons besoin de vous ! Il faut des fonds pour mettre en place une base de données bio-informatique qui permettra peut-être de trouver le SUPERGÈNE, celui qui empêche que le syndrome ne soit trop sévère chez certains patients, pour développer des nouveaux traitements.
Je suis personnellement impliqué dans ce projet car une personne qui m'est très chère est atteinte d'une maladie rare, et j'espère qu'on pourra trouver des solutions pour elle et pour les autres 300 millions de patients atteints d'une maladie rare dans le monde.
— Pierre
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 (5)
5 magic donors are supporting "A la recherche du SUPERGÈNE"
50 €
Edith
— 4 years ago
Bonne réussite !
50 €
Jacqueline
— 4 years ago
Que tous nos efforts et nos pensées et nos dons soutiennent et aident tous ceux qui se consacrent à ce projet. Bravo à eux
100 €
Isabel
— 4 years ago
Merci pour votre implication et votre soutien !!!!
50 €
Marie
— 4 years ago
50 €
Pierre
— 4 years ago
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That's fantastic ! Your donation makes a difference !
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