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Together we are stronger - L’Union fait la force
by Micheline Borrey Martens
230€ raised
Goal 500 €
(version in French below)
Together we are stronger
It is in the spirit of Christmas that I am reaching out to you my friends and asking you to share this message. The grandson of one of my good friends, Aurelien has been diagnosed with a rare disease [Marfan syndrome].
His parents have created a foundation called the Fondation 101 Genome.
And have also launched the Projet 101 Genome Marfans, which is a pilot project of the F101G and which deals specifically with the Marfan syndrome.
It aims at promoting research in this field by creating for researchers an innovative bioinformatics platform that will help create more specific medication that could reduce the severity of the symptoms for the patients and thus improve their quality of life.
All together we can help them advance research by 10 years if we support their research.
I am hoping I can count on your support.
Thank you. From the bottom of my heart.
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L’Union fait la force
(devise nationale de la Belgique entre autres)
C’est dans l’esprit de Noël, que je m’adresse à vous tous et vous demande de partager ce message. Le petit-fils de mon amie, Aurélien, est atteint d’une maladie rare.
Les parents d’Aurélien ont créé La Fondation 101 Génomes (F101G, www.f101g.org). Et dans la foulée, ils lancent le Projet 101 Génomes Marfans (P101GM), projet piloté de la F101G, consacré au syndrome de Marfan.
Le projet a pour objectif de promouvoir la recherche en mettant à la disposition des scientifiques et des chercheurs une plateforme bio-informatique inédite, qui permettra de créer des médicaments plus spécifiques en vue d’amoindrir la sévérité des symptômes des patients et des lors améliorer leur qualité de vie.
Tous ensemble, on peut les aider à gagner 10 ans de recherche en soutenant leur cause.
J’espère pouvoir compter sur vous et vous remercie d'avance du fond du coeur.
— Micheline
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 "Together we are stronger - L’Union fait la force"
50 €
Nathalie
— 4 years ago
10 €
david
— 4 years ago
50 €
Patrick
— 4 years ago
20 €
Jack
— 4 years ago
100 €
Micheline A
— 4 years ago
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That's fantastic ! Your donation makes a difference !
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