/pictures/picture%2Fd3e0472fb3999de552436b2b7fc6cada_sophieT.jpg)
Sometimes, we need a lil help to bridge a gap and the more the merrier!
by Sophie Triollet
50€ raised
Goal 500 €
Sometimes, we need a lil help to bridge a gap and the more the merrier!
How about speeding this up 10 years?
One of my friend's nephew had been diagnosed with a rare disease [Marfan syndrome]. To fight this and to spread awareness, his parents have created a non-profit organization called the "Fondation 101 Genomes" as well as pilot project "Projet 101 Genome Marfans".
It's aim is to promote research in this field by creating an innovative bioinformatics platform for researchers in the hope to create more specific medication to reduce the severity of the patient's symptoms and improving their everyday quality of life.
You may not resonate with this specific condition, just know that it is with people like us that we can make a difference.. (once i was diagnosed with MS- luckily gone by now- and the progress in this field is paramount because driven and generous people were there to push!).
Hope you join us!
XOXO
— Sophie
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.
Donation (1)
donation to "Sometimes, we need a lil help to bridge a gap and the more the merrier!"
50 €
ocean front consulting
— 4 years ago
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