On Wednesday May 31, 2023, Ludivine and Romain were invited by Olivier Sokolski and Laurent Poznantek to take part in the "Meet the Boss" program on Radio Judaica to present the work of 101 Génomes and share their vision for research into rare diseases.
In this program, Ludivine and Romain talk about Marfan syndrome and the discovery of modifier genes, which is at the origin of the research model they have set up.
This model is based on four essential pillars:
- A first financial pillar with Fund 101 at the King Baudouin Foundation,
- A second logistical and operational pillar with the creation of the 101 Genomes Foundation biobank,
- A third bioinformatics pillar based on the 101 Genomes Foundation's Genomic Cloud, and finally,
- A fourth pillar dedicated to the optimal management of dynamic consent from research participants.
During the interview, the possibility of transposing the 101 Genomes model to other rare diseases was discussed. This highlighted the model's potential to benefit as many people as possible suffering from rare diseases.
On this occasion, Romain and Ludivine emphasized that research into rare diseases forces scientists to question biological mechanisms that concern us all, far beyond the specific cases of people suffering from rare diseases. Indeed, this research is advancing our understanding of the human genome, paving the way for the treatment of rare diseases, as well as much less rare ones. That's why people with rare diseases have so much to offer us as a reward for our efforts to help them.
The interview is available as a podcast in its entirety via the following link: https://open.spotify.com/episode/1LzkCnIonn2vwNB3yB9Z9v?si=z15gpoYhRiKn-F34P5Siwg
The studio recording can also be viewed via the following link: https://www.facebook.com/radiojudaica/videos/1278825449428311
Once again, we'd like to warmly thank Olivier Sokolski and Laurent Poznantek, as well as the Radio Judaica team, for this wonderful opportunity to share the vision and achievements of 101 Genomes.