by Miguel Herrero
Rare diseases are not so rare. 300 million people around the world suffer from a rare disease, and unfortunately my niece is one of them.
I’m impatient because her illness will progressively damage her heart. I’m impatient because there is no cure and because I want science to move faster than her illness.
I am contacting you because I want you to help me raise funds for research on rare diseases.
Making a gift is as simple as cake, and here are some reasons to motivate you:
- Your gift will support the Fondation 101 Génomes. It’s a patient-driven initiative which will develop a new bioinformatics tool which is key to develop new and better treatments for rare disease patients.
- I find it’s an amazing initiative because patients are not just waiting for things to happen by themselves. Patients are in the driving seat and with their energy they are supporting a medical revolution though genomics and artificial intelligence.
- The Fondation 101 Génomes has excellent credentials: a scientific committee made of top-notch scientists, 500.000 EUR collected in 2 years, the Edelweiss Price awarded by Radiorg in 2018, and they are also hosted by the Fondation Roi Baudouin.
- Your gift is fiscally deductible, so if you donate 50 EUR it will only cost you 22 EUR.
- Making a donation will take you less than a minute, but satisfaction will last forever.
Your gift - small or big - will make a difference if we are many to donate and to join Impatients !
— Miguel
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.
Besinos!!
Junt@s conseguiremos este super objetivo!!
Joyeux Noël, Miguel. Merci pour ton soutien à la Fondation 101 Génomes qui nous donne tant d’espoir.
Buena campaña. Ánimo!
Your niece is lucky to have such a great uncle!
Pleins de bisous et de bon karma! Let’s kick Marfan’s ass together! ?
Merci Miguel. Ce que vous faites est vraiment super.
Great work!
Well done Miguel, let’s go for it!
Gracias hermano querido!
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