/pictures/picture%2Fa54f16892592e369374c7c177cca7820_photo+4.JPG)
Rare ...
by Catherine de Borchgrave
2 035€ raised
Goal 2200 €
Rare !
Comme une perle rare, traquée obstinément au fond des mers par les chasseurs de perle.
Comme un oiseau rare, dans les forêts lointaines et mythiques..
Comme une maladie rare, près de nous sans qu’on y prête garde, jusqu’au jour où elle fait partie de nous car un enfant chéri est diagnostiqué porteur d’une maladie génétique rare. C’est ainsi que le syndrome de MARFAN est entré dans ma vie et celle de ma famille.
Impatiente !
Très vite, j’ai découvert le formidable combat de parents, de médecins, de chercheurs pour changer, grâce à la recherche génomique, la perspective, et la façon de soigner, voire l’espoir de guérir le MARFAN, et d’autres maladies rares.
Le Projet 101 Génomes porte loin cet espoir, une volonté partagée d’accélérer les découvertes génétiques jusqu’à la mise au point de thérapies réelles !
Les équipes de chercheurs sont en place, le protocole de recherche existe !
C’est à moi, à nous, de donner un solide coup de pouce en permettant le financement du projet.
Chaque don de 40 € ou plus donne droit à une attestation fiscale.
Merci!
— Catherine
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 (20)
20 magic donors are supporting "Rare ..."
150 €
Anonymous
— 4 years ago
50 €
Anonymous
— 4 years ago
50 €
Anonymous
— 4 years ago
50 €
Catherine
— 5 years ago
150 €
nicola
— 5 years ago
♥️
150 €
Javier
— 5 years ago
35 €
Thomas
— 5 years ago
Merry Christmas ?
50 €
Julien
— 5 years ago
Joyeux Noël Maman! Merci pour ton aide au quotidien et ton soutien à la Fondation 101 Génomes qui nous donne tant d’espoir.
200 €
Anonymous
— 5 years ago
Bravo! Nous mettons beaucoup d'espoir dans ce beau projet de recherche
100 €
Bénédicte
— 5 years ago
50 €
Anonymous
— 5 years ago
50 €
Martine
— 5 years ago
100 €
Anonymous
— 5 years ago
50 €
Genevieve
— 5 years ago
150 €
guy
— 5 years ago
Join the fight
Go ahead! Raising funds for a good cause is easy
The beneficiary of your donation is 101 Génomes, who will establish your tax return document. The transaction is managed by Stripe - payment solutions, implemented by Raise & Shine SCRL — developer and host of the website you are visiting right now.
That's fantastic ! Your donation makes a difference !
Ooops... Failed payment... Sorry about that
Our payment provider encountered a problem, don't hesitate to try again later. Please write us to info@f101g.org for more information