We Have Joined the CZI Rare As One Network!

We are thrilled to announce that the KCNT1 Epilepsy Foundation (KEF) has been selected to join the Chan Zuckerberg Initiative’s Rare As One Network and has been awarded a multi-year grant! This incredible opportunity will help us build capacity, transition from a volunteer-driven organization and expand to include more experienced professionals, and advance our mission to drive research collaborations and support families affected by the KCNT1 gene mutation.

As part of the CZI Rare As One Network, patient-led organizations like ours are developing and launching collaborative research networks in partnership with clinicians and scientists. This program provides the funding, tools, and support we need to build the foundation for groundbreaking advancements. We’re honored to be one of 31 new patient-led organizations joining this incredible community, and we can’t wait to connect, collaborate, and drive progress together!

"This grant is a transformative step for our organization, enabling us to connect researchers, families, and clinicians to foster innovative treatments," said Justin West, MD, President of KEF. 

We are deeply grateful to be part of this inspiring RAO network and beyond thankful to everyone who has supported us on this journey. Your belief in our mission has brought us here, and we can't wait to take the next steps together!