On #RareDiseaseDay 2025, we had the privilege of hosting a deeply moving and insightful webinar with Rob van der Stel, who shared his personal experience with RETT syndrome—a journey shaped by his daughter, Terre.
(read on below picture)
Rob’s story was not just one of personal hardship but of resilience and action. Inspired by his daughter’s battle with RETT, he founded Stichting Terre, a foundation dedicated to advancing research and support for those affected by this rare neurological disorder. His firsthand perspective shed light on the urgent need for innovation in gene therapy and the challenges faced by families navigating life with a rare disease.
This webinar was organized as part of the GET-IN MSCA program, where our doctoral candidates and other participants engaged in meaningful discussions on the future of gene therapy and how patient-driven initiatives can accelerate scientific breakthroughs.
A huge thank you to Rob for sharing his story and for his relentless advocacy. Let’s continue to work together to push the boundaries of gene therapy innovation and bring hope to those affected by rare diseases.