Post by Erik Janssen

Ahead of Rare Disease Day tomorrow, I am sharing something personal. Those of you who know me, will know that back in July 2024, I was diagnosed with a rare kidney disease after a long and uncertain journey. It changed my perspective, not only on health, but on identity, care and what truly matters. I am thankful to my family, friends, my amazing Stanford Circle, healthcare professionals, colleagues at UCB for all the support along the way. A special, thank you to Claudia Salvischiani, Deirdre Quarnstrom, Marc Ducharme, MBA, IAS.A, Enrico Carbone, Alejandro Gonzalez Dale, Deen Roussel, Jessie Dighneef, Ella V., Ellen Bisschop, Athanasia Gkiouleka, Mike Davis, Emmanuel Caeymaex, the #UZLeuven nefrology staff, and of course my amazing #DCTx team for their continued support and stepping in. This article is a reflection on that experience, the people who made a difference, and why both care and cure matter deeply in rare disease. It also strengthens my commitment to digital care transformation at #UCB, advancing smarter, more coordinated health systems that reduce fragmentation and make it easier for people with chronic conditions to navigate care with confidence and continuity. If you have a moment, I invite you to read and reflect. #RareDiseaseDay #RareDisease #RDD2026 #PatientExperience #UltraRare #HealthEquity #HealthCare #TeamUCB Frank Vandenbroucke