CCHS NOW Registry

  • 28

  • Feb

  • days left

CCHS NOW Registry

The CCHS Foundation, in partnership with NORD, is excited to announce the launch of Phase 2 of the CCHS Network One World Registry.   ALL of the questions in Phase 2 are geared specifically towards CCHS.

“The CCHS Network One World (NOW) Registry will provide a complete picture of each patient’s experience with CCHS,” said Eddy Yang, MD, PhD, Chair of the CCHS Network Research Advisory Board. “We are launching this initiative to help fill the missing link researchers and medical experts need to advance research and get to a cure.”

YOUR VOICE MATTERS – PLEASE go to https://cchsnowregistry.iamrare.org and log back in, or join the registry.


CCHS NOW Registry

Consider joining the CCHS NOW Registry: https://cchsnowregistry.iamrare.org


  • -17678 days left