Exactly two years ago, on February 28, 2024, on the occasion of Rare Disease Day, Hortense de Castries and Jean-Baptiste Van Ex launched the GENeHOPE fund. Their ambition was clear: to support research into genetic diseases and accelerate access to diagnosis and treatment for patients and their families.
Two years later, Jean-Baptiste Van Ex and Professor Anne De Paepe, physician, geneticist, honorary Rector of Ghent University (UGent), and Chair of GENeHOPE’s Scientific Committee, share their perspectives. Between personal commitment and scientific rigor, their voices converge around a shared conviction: collaboration is the key to transforming hope into tangible progress for patients.
Bringing people together to move faster
When asked what he is most proud of after two years of GENeHOPE’s existence, Jean-Baptiste Van Ex does not mention figures or funds raised: “The road ahead is still long, but we have succeeded in bringing together around the table individuals of exceptional human and scientific quality, deeply committed to this cause. Creating this collective momentum is undoubtedly our greatest achievement.”
Anne De Paepe agrees. What stands out to her, as a scientist, is the quality of the projects and the way the fund builds bridges: “The scientific rigor of the projects supported by GENeHOPE and its ability to connect researchers, bringing together complementary expertise, sometimes at an international level, around complex issues are extremely important to me.”
GENeHOPE does more than provide funding. It connects. It catalyzes. Jean-Baptiste expresses this clearly: “Every time a researcher collaborates with another center, every cross-disciplinary project that emerges is progress in itself. We encourage encounters, build bridges, and bring expertise together to go further, together.”
Anne offers a concrete illustration: “We see teams working on different aspects of the same disease : one on the kidney, another on the pancreas, for example. Their collaboration allows us to understand the full picture. It is this meeting of specializations that truly accelerates research.”
From science to tangible impact
For Jean-Baptiste, the objective is clear: “Our ambition is to fund more collaborative projects each year and to partner with the best research centers in Europe. The goal is to turn discoveries into concrete solutions for patients.”
Anne De Paepe places this commitment within her experience as a physician: “I have met many patients whose journey to obtain a clear diagnosis was a true odyssey, often lasting several years. Improving the quality of diagnoses, supporting patients, and developing therapies remain major current challenges.” She continues: “For some diseases, we still do not know the causes; for others, there is no targeted treatment. But I am convinced that knowledge and international collaboration can help us move forward more quickly.”
Once again, their visions align: science progresses but it must progress together. And beyond laboratories and scientific publications, one reality remains: behind every project, there are faces. Families.
Patients: driving forces and partners
Jean-Baptiste addresses donors directly: “Thank you to those who already support us. And to those who are still hesitating: supporting research in genetics means much more than supporting so-called ‘rare’ diseases. Genetics lies at the heart of many common conditions. By funding this research, you are also contributing to advancing the understanding and treatment of diseases that, ultimately, concern almost all of us.” “Joining GENeHOPE means becoming part of a dynamic that goes beyond numbers and seeks a lasting impact on health in the broadest sense.”
Anne De Paepe emphasizes the human dimension: “Research is never abstract. Behind every research project, there are patients. They are both the driving force behind researchers’ motivation and their partners, through the information they share that fuels research.” She adds, with conviction shaped by years of practice: “It is these human experiences, lived as both a physician and a researcher, that convinced me of the importance of understanding genetic diseases, not only for science, but to directly help patients and their families.”
Two years and a clear direction
In two years, GENeHOPE has laid the foundations for an ambitious dynamic where international collaboration, scientific excellence, and human commitment move forward hand in hand.
Their greatest wish on the occasion of this second anniversary?
For Jean-Baptiste, it is simple: “That the momentum continues to grow. That more and more researchers, partners, and supporters join the journey. Every new project funded is a step toward potential diagnoses and treatments.”
For Anne, the stakes are just as essential: “To preserve scientific quality, expand collaborations at the international level, and never lose sight of those for whom research exists. I can only encourage the creation of initiatives similar to the one led by Jean-Baptiste and Hortense, as their commitment concretely supports scientific progress. Supporting them is, in itself, already a major gesture.”
Two years of existence. A long road still ahead. But one shared conviction: it is together (researchers, patients, partners and donors) that hope becomes progress.
