Caroline and Guillaume: “We haven’t pulled a rabbit out of the hat for him just yet…”
Twelve-year-old Guillaume is living with Duchenne muscular dystrophy, a genetic condition that progressively affects the muscles. Ever since the diagnosis, his mother Caroline has been tirelessly seeking to understand the disease and find the best ways to support her son. Now, as he enters a new stage of the condition, she shares their daily reality, […]
An exceptional evening celebrating ‘Qui brille au combat’ and GENeHOPE
At the beginning of October, we had the pleasure of welcoming a wonderful group of guests to TheMerode for an evening dedicated to cinema, emotion and connection, centred around the film Qui brille au combat, with lead actress Sarah Pachoud and producer Antoine Playoust in attendance. We are delighted to share interviews with Hortense de […]
Florence, 34: « For diseases as rare as mine, research is desperately lacking in resources. »
At 34, Florence has a head full of plans, passions and dreams. She works in finance, designs wedding dresses as a self-employed side business, and has been sharing her life with her husband Nicolas for almost 13 years. She would also love to start a family. But behind this busy, fulfilling life lies an extremely […]
A major discovery: the pancreas, an overlooked target of ciliopathies
Ciliopathies are rare genetic diseases caused by abnormalities in primary cilia – tiny cellular structures that play an essential role in communication between cells and in organ development. Until now, these diseases had mainly been associated with disorders affecting the kidneys, liver or eyes.However, a recent study led by Patrick Jacquemin (researcher at the de […]
“He will be happy.” The sentence that changed everything for Sybille, mother of little Victor with Williams syndrome
When Sybille Lancksweert talks about the birth of her second son, Victor, the emotion is still as strong as ever. “I hope that I will cry all my life when I tell this story… Because in fact, that is also our strength. Crying simply means the path has been difficult, and sometimes still is. And […]
Igor: when research opens the door to hope
Through the story of her son Igor, geneticist Daphné t’Kint shares how recent advances in research are now opening the way to new therapeutic perspectives. Igor was born in 2013, one year after his big sister. A beautiful baby weighing 3.8 kilos. A smooth pregnancy, an uncomplicated delivery. Nothing suggested that, just a few hours […]
Two years of GENeHOPE: a conversation between Jean-Baptiste Van Ex and Anne De Paepe
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 […]
Every day counts: speeding up SCID genetic diagnosis
How can we confirm a genetic diagnosis more quickly in a newborn affected by Severe Combined Immunodeficiency (SCID)? This is the question that Prof. Filomeen Haerynck (Ghent University) set out to explore as part of the fourth and final research project funded this year by the GENeHOPE Fund. SCID is one of the most life-threatening […]
Understanding the Loeys-Dietz syndrome
Imagine a single genetic defect that can affect blood vessels, the skeleton, and the immune system, and yet, each patient experiences it differently. This is the reality for children and adults living with Loeys-Dietz syndrome, a rare and unpredictable genetic disease. The third project supported this year by the GENeHOPE Fund is exploring a defect […]
Ciliary genetic diseases: how pancreas and kidneys are affected?
What happens when a single genetic mutation affects not just one organ, but several? This is the question guiding another exciting project supported by the GENeHOPE Fund in 2025. Mutations in the NPHP3 gene can cause a rare disease known as a ciliopathy, often leading to kidney failure in children. Scientists have discovered that the […]
