Anniversaire de Pierre-Axel / Celebrations

Chers amis, chère famille,

Merci beaucoup de visiter cette page.

Cette année, à l'occasion de mes 50 ans, j’ai choisi de souffler mes bougies un peu différemment.

Plutôt que des cadeaux, je souhaite offrir un élan d’espoir à celles et ceux qui vivent avec une maladie rare.

Je vous propose donc de soutenir le projet de recherche lancé par un couple d'amis proches dont le fils est atteint du syndrome de Marfan. Vous trouverez ci-dessous une description de l'action de la Fondation 101 Génomes.

Les dons de 40 euros et plus sont déductibles fiscalement.

Merci et au plaisir de vous revoir le 28 août.

— Pierre-Axel

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 (3)

3 magic donors are supporting "Anniversaire de Pierre-Axel"

250 €

Anonymous — 17 days ago

200 €

Anonymous — 18 days ago

Bon anniversaire Pierre-Axel!

50 €

Anonymous — 21 days ago

First Name
Name
Company Name
Company Number
E-mail
Address
City
Country

Anniversaire de Pierre-Axel

Donations (3)

Let's do it together

Join the fight

Ooops... Failed payment... Sorry about that

Anniversaire de Pierre-Axel

Donations (3)

Let's do it together

Join the fight

That's fantastic ! Your donation makes a difference !

Ooops... Failed payment... Sorry about that

Every time Anniversaire de Pierre-Axel is shared, it helps fundraising up to 90 €

That's fantastic ! Your donation makes a difference !