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

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