“Our goal is for the 1 in 10 Americans with rare diseases, most of whom are children, to have a treatment and cure, and we developed NORD’s Natural History Study platform to eliminate challenges standing in the way of that target.”
-Peter L. Saltonstall, President and CEO, National Organization of Rare Disorders
In 2016 the CCHS Network was chosen, after a competitive selection process, to partner with the National Organization of Rare Disorders (NORD), to develop a Natural History Study of CCHS: CCHS Network One World Registry (CCHS NOW Registry). The CCHS NOW Registry is a longitudinal study that aims to… learn more
You may also contact the CCHS NOW Registry for more information about this project.