Foundation Receives $800,000 CZI Rare As One Grant

The ZTTK SON-Shine Foundation has been awarded an $800,000 grant over five years as part of the Chan Zuckerberg Initiative's Rare As One project. The grant recognizes the foundation's collaborative approach to building the scientific and patient infrastructure needed to advance ZTTK research.

CZI's Rare As One initiative supports patient-led organizations working to accelerate research for rare diseases. The investment will fuel the foundation's efforts in data collection, natural history studies, and building partnerships with academic and industry researchers.

This grant represents a significant validation of the ZTTK community's work and positions the foundation to expand its research programs, strengthen its patient registry, and deepen collaborations with leading scientific institutions.