Let’s help researchers find a cure for rare diseases!

by Barbara Herrero

Let’s help researchers find a cure for rare diseases!
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About two years ago, my niece was diagnosed with a rare genetic disorder affecting connective tissue in her bones, joints, and heart. It's a life-threatening condition if it remains undiagnosed or untreated. There are treatments, but they are not 100% effective and the severity of symptoms tends to worsen with age. This rare disease affects 1 in 5000 people: that makes about 2000 people in Belgium, and nearly 2 million people around the world.

Until recently, people suffering from a genetic disease had to accept their fate, and hope for the best. But luckily, there are some patients who don't accept their fate.

Fondation 101 Genomes is a patient-led initiative that wants to help scientists move forward faster, much faster, in their research. F101G wants to build an innovative bioinformatic database specialised in rare diseases.

With the help of artificial intelligence and genomics, the database will help to understand why some patients have worse symptoms than others, even if they have the exact same mutation. This is the tool scientists need to develop new and better diagnostic tools, to find more efficient and personalised treatments, perhaps even a cure for rare diseases!

The pilot project of F101G is focused on Marfan syndrome, but if they succeed, they will expand to other diseases, potentially helping the 300 million people around the world who live with a rare disease.

No wonder they are impatient... So am I! Have I made you Impatient too?

I would like you to join us in our crowdfunding effort. Every small donation counts and brings us closer to finding a cure for rare diseases.

Thank you for your Impatience!

— Barbara

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 (11)

11 magic donors are supporting "Let’s help researchers find a cure for rare diseases!"
40 €
Daniel  —  2 years ago
100 €
Christopher  —  4 years ago

Let's keep up the momentum to support Impatients! Rosi and Chris

80 €
Barbara  —  4 years ago

I hope my little contribution helps in this important endeavour!

80 €
Anonymous  —  4 years ago

Let's make this happen!!

50 €
Alisa  —  4 years ago

Merry Christmas! with our collective effort we support groundbreaking research and give hope to many people affected by rare diseases. Thank you Barolita!

50 €
Anonymous  —  5 years ago

Muy buen y esperanzador proyecto !

100 €
Daniel  —  5 years ago
20 €
Anonymous  —  5 years ago
100 €
Merce  —  5 years ago

Gran iniciativa!!

50 €
Anonymous  —  5 years ago
50 €
Alisa  —  5 years ago

Gracias Barolita por apoyarnos. Entre todos vamos a ir más rápido!

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