Join us for a brief session to learn about the Citizen Patient Registry and why it is so important for individuals with CFC syndrome to be registered.

A patient registry is a secure database that collects medical information from people with the same condition. Registries help drive research, improve understanding, and support better care for rare disorders like CFC.

CFC International has partnered with Citizen to ensure all patient data is stored in one safe, centralized place. Citizen’s mission—People helping people—reflects their commitment to using shared experiences to support families facing rare and complex conditions. They envision a future where every patient has quick access to personalized guidance at every stage of their journey.

By registering, CFC patients contribute to stronger research, better resources, and a more informed community. Join us to learn how the registry works and why your participation matters.