The CCHS Network exists to support and to educate families and patients who have a diagnosis of Congenital Central Hypoventilation Syndrome (CCHS). We hope you will register with the Network to join hundreds of other families from around the world! Together, we aim to support work toward finding a cure or effective treatment for CCHS within our children’s lifetimes.
To register with the CCHS Network, you must have a confirmed CCHS diagnosis. Please give your mutation in the form below. If you do not know your (the patient’s) mutation level or type, you may obtain that information from your medical record or your physician who would have had the testing done. If the CCHS test has not been done, please see the Genetic Testing Centers page of the Resources section for more information on how and where genetic testing to confirm a CCHS diagnosis can be done.