The initiative aims to raise funds for the first national clinical trial for CTNNB1 syndrome, scheduled for late 2026 at the Sant Joan de Déu Hospital in Barcelona.
Tickets are available via the Columbus Foundation website and the Fever platform. The funds will help provide treatment access to approximately 49 children affected by this rare condition.
“"Financing a treatment for a rare disease is expensive, but we cannot accept that technically possible solutions fail to reach patients due to a lack of funding."
CTNNB1 syndrome is a genetic neurodevelopmental disorder affecting one in 50,000 children worldwide. Since 2017, the Columbus Foundation has focused on developing philanthropic models to make therapies for ultra-rare diseases viable.
