The CCHS Network, in partnership with NORD (National Organization for Rare Disorders), has launched the CCHS Network One World Registry – CCHS NOW).
We are actively recruiting CCHS patients from around the world into the study. It is open to everyone, nationally and internationally, who has been diagnosed (clinically or genetically) with CCHS.
Please share with your local CCHS communities, inviting them to join the Registry.
The goal is to create a data bank for any researchers who seek to investigate/do research on CCHS!
The funding for this work is being covered by NORD and the CCHS Network
The link to the registration: https://cchsnowregistry.iamrare.org