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Pour mon élève et tous les autres enfants souffrant d'une maladie génétique
by Gioachino Immordino
150€ raised
Goal 500 €
Une de mes élèves est touchée par le syndrome de Marfan. C’est une maladie génétique qui affaiblit les tissus conjonctifs. Les articulations sont plus souples, le coeur plus fragile. C’est une maladie rare qui affecte 1 personne sur 5000.
Je veux aider cet enfant à jouer de la guitare malgré ses doigts fins et souples. Mais surtout je veux l’aider à avoir confiance dans son avenir. Je veux aider ses parents à faire avancer la science plus vite que la maladie de leur enfant.
C’est pourquoi je soutiens la Fondation 101 Génomes. Grâce à un outil inédit (qui utilise la génomique et l’intelligence artificielle), la Fondation 101 Génomes va permettre aux chercheurs de mieux comprendre les maladies génétiques. Ils pourront mettre en place de nouveaux traitements beaucoup plus efficaces pour guérir le syndrome de Marfan et autres maladies génétiques.
Devenez des Impatients! Soutenez avec moi ce beau projet.
Même les petites contributions feront la différence.
Merci !
— Gioachino
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 "Pour mon élève et tous les autres enfants souffrant d'une maladie génétique"
100 €
Gioachino
— 4 years ago
♥️♥️♥️
50 €
Michel
— 4 years ago
Pour les enfants et les adultes atteints d'une maladie génétique, il y a maintenant une formidable opportunité de découvrir de nouveaux moyens de diagnostic et de traitement. Nos dons servent à financer une recherche totalement novatrice, combinant les moyens de la génétique, de l'informatique et de la médecine au niveau le plus élevé. C'est super !
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That's fantastic ! Your donation makes a difference !
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