Quand les patients sont acteurs de leur futur traitement, je suis contaminée par l'impatience!

by nathalie Paiva

Quand les patients sont acteurs de leur futur traitement, je suis contaminée par l'impatience!
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Quand un enfant aimé est touché, quand une famille proche se relève de l'impuissance, les maladies rares ne riment plus avec oubli et indifférence.
La solution est à portée de mains, portée par la communauté des patients, attendue par les scientifiques en manque de moyen.
Avec moi, avec les personnes atteintes, avec leurs familles, avec leurs amis, avec tous les impatients, vous pouvez contribuer à apporter une meilleure vie à l'enfant aimé et à tous ceux aussi auxquels je pense désormais.

Les dons de plus de 40 euros bénéficient d'une déductibilité fiscale.

— nathalie

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 (16)

16 magic donors are supporting "Quand les patients sont acteurs de leur futur traitement, je suis contaminée par l'impatience!"
50 €
maud  —  4 years ago
100 €
Virginie  —  4 years ago
150 €
Anonymous  —  4 years ago
50 €
samuel  —  4 years ago
100 €
IRINA  —  4 years ago
50 €
Nicolas  —  4 years ago
50 €
Anonymous  —  4 years ago
50 €
Bernadette  —  4 years ago
50 €
Spori  —  4 years ago
50 €
Jan  —  4 years ago
20 €
Muriek  —  4 years ago
50 €
Anonymous  —  4 years ago
50 €
MILaine  —  4 years ago
50 €
Isabelle  —  4 years ago
50 €
Isabelle  —  4 years ago

Beau projet, je soutiens à bientôt Isabelle

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