CCHS Network One World Registry

One World, One Family, One Hope


Welcome to the CCHS Network One World Registry serving the Congenital Central Hypoventilation Syndrome (CCHS) Community! This free platform is a way to connect patients, families, and caregivers from across the world. Please consider being part of our rare journey and join now!

For Researchers

Drive Research

This is a unique rare disease patient registry. Are you interested in using our data to further your rare disease research?

For Patients

Get Involved

Information collected during this study may be used to help provide opportunities for patients and researchers to collaborate in the rare disease community.