Hello,

🔬 Last weekend, the French-language Belgian newspaper La Libre Belgique highlighted the journey of Aurélien and the 101 Génomes Foundation in an article that deeply moved us and that we would like to share with you.

This article, which tells the story of Aurélien and then traces the origins, current status, and future ambitions of 101 Génomes, is available to subscribers of the newspaper via this link or via this link for everyone else.

Our son Aurélien has Marfan syndrome, a condition that still leaves many questions unanswered for families and doctors.

What began as a deeply personal story for our family has become a mission: to accelerate research and bring hope to patients with rare genetic diseases and their loved ones.

Through 101 Genomes, we are working to build one of the largest genomic databases dedicated to understanding the variability of this disease and improving patient care.

To date, more than 230 participants from around the world have already shared their genomic data with 101 Genomes to make it available for research.

Our current goal is to collect 303 genomes from people with Marfan syndrome andto expand our model to other rare diseases.

“Wanting to give meaning to Aurélien’s story and provide real support to research that struggles to access data, Ludivine and Romain created a model that can be extended to other rare diseases, building on their pilot project focused on Marfan syndrome.”

The article that *La Libre Belgique* has dedicated to us is a great opportunity to raise awareness about rare diseases, the importance of data sharing, and the power of collective action in advancing research.

A huge thank you to all the families, researchers, clinicians, partners, and donors who have supported this journey from the very beginning. Every contribution brings us closer to new discoveries and, we hope, a brighter future for generations to come.

Best regards,

Romain and Ludivine
for 101 Genomes