Sebastian Honoré | Founder & CEO at Cure Lowe Foundation
Cure Lowe Foundation

Sebastian Honoré is the Founder and CEO of Cure Lowe Foundation, a non-profit organization focused on accelerating research and treatment development for rare diseases, with a particular emphasis on Lowe Syndrome. Sebastian founded the organization after his son Walther was diagnosed with Lowe Syndrome shortly after birth. With a background in health economics and public policy, he brings a strategic perspective to advocacy and orphan drug development. Through Cure Lowe Foundation, he has led initiatives to raise awareness, fund early-stage research, and shape policies that improve outcomes for rare disease patients. Sebastian is also the founder of Walther Therapeutics, a biotech spinout developing gene therapy for renal tubulopathies. His work bridges the gap between patients, researchers, and industry, and focuses on building cross-sector partnerships to advance new treatments from proof of concept to the clinic. At the World Orphan Drug Congress 2025, Sebastian will share insights on early-stage strategy, patient-led development, and nonprofit–industry collaboration models in the orphan drug field.