Mission
Our mission
The quest for protective genes
Why are some children sick when they shouldn’t be? Why aren’t some adults when they should be? Part of the answer to these questions lies in our genes.
In the context of rare diseases, this response would make it possible to envisage therapies for diseases that are currently incurable.
101 Genomes enables researchers to embark on the quest for protective genes capable of counteracting the impact of the mutation that causes the disease.
The identification of potential protective genes within the genome could lead to new therapeutic avenues that would replicate their protective effects.
One mission, four pillars
101 Genomes’ mission is to facilitate genome exploration to better understand and treat rare diseases.
Its Genomic Cloud contains the complete genomic data (WGS) of people with rare diseases and “control” individuals, enabling researchers and bioinformaticians to better understand the interactions between genes and the mechanisms underlying rare diseases.
Its Biobank preserves the biological samples of participants in the research it supports.
Its innovative data collection and dynamic consent management solutions ensure that participants have full control over their data and can express truly informed consent.
Finally, our partnership with the King Baudouin Foundation guarantees the deductibility of donations and the optimal management of gifts and bequests entrusted to us.
These 4 pillars of the 101 Genomes model’s success can be transposed to other rare and less rare diseases.
Our history
Ludivine and Romain Alderweireldt-Verboogen created 101 Genomes to help people who, like their young son, are affected by rare diseases. Their work begins with Marfan syndrome, a rare connective tissue disorder resulting from a variant on the FBN1 gene.
By analyzing a genetic database of healthy individuals, Romain discovered numerous variants of the FBN1 gene considered pathogenic in the literature, but present in people without symptoms. This suggests the existence of protective genes capable of compensating for the failure of the FBN1 gene. This discovery, since confirmed by research, triggered their initiative.
Their ambition is to enable the identification of these protective genes in order to replicate their effects through drugs, possibly repositioned, to better treat Marfan syndrome. They also observed that these protective mechanisms are involved in other rare diseases, such as cystic fibrosis, and that their approach can be applied to many pathologies to accelerate the discovery of new therapies. Thus, 101 Genomes was designed to extend to a wide range of rare diseases.
Genomics & algorithms
101 Genomes supports genomic and bioinformatics research to better diagnose and treat rare diseases. Its aim is to make available to researchers a biobank containing the complete genomic data (WGS) of people with rare diseases and “control” individuals. This Genomic Cloud will enable researchers and bioinformaticians to better understand the interactions between genes and the mechanisms underlying rare diseases.
According to Professor Anne De Paepe, Prorector of Ghent University, this is “a unique and unprecedented example of patient participation in scientific research “.
Our Key Dates
Bodies
The Board of Directors of the 101 Genomes Foundation is composed of four statutory directors.
King Baudouin Foundation
101 Genomes has partnered with the King Baudouin Foundation to jointly manage the 101 Genomes Fund, intended to raise the necessary funds for its activities.
Donations made to 101 Genomes are paid into an account held by the King Baudouin Foundation and are tax deductible.
Our partnership with the King Baudouin Foundation guarantees that donations are tax-deductible in all European countries and in many countries outside the European Union.
Support 101 Genomes
By supporting our work, you are primarily supporting research dedicated to Marfan syndrome, but you are also more broadly supporting a genomic approach that benefits numerous research groups active in the field of rare diseases.
