CCHS Network (Congenital Central Hypoventilation Syndrome)

Established in 1989 by Mary Vanderlaan, the CCHS Family Network emerged in response to her own experience with a CCHS-afflicted child. Our primary goals are to raise awareness about this rare condition, offer education and support to affected families and patients, and facilitate communication within the CCHS community. As a non-profit organization recognized by the United States government, we operate under the banner of the CCHS Network.

Our efforts extend globally, fostering dialogue between physicians and patients. Additionally, our CCHS Foundation and Research Advisory Board are dedicated to financing and advancing crucial research initiatives both domestically and internationally.

Run entirely by volunteers, many of whom have firsthand experience with CCHS, our mission is clear: to empower and stabilize patients and families affected by CCHS, advocate for education and awareness within medical and lay communities, and mobilize global resources to drive forward research efforts for improved treatments and, ultimately, a cure for CCHS.

We remain committed to providing unbiased information about available resources and ongoing research, without favoring any particular provider, technology, treatment approach, research team, or medical practitioner.