1) To register with the CCHS Network, you must have a confirmed CCHS diagnosis.
The CCHS Network will accept one of two widely-used standards of CCHS for membership in the CCHS rare disease community: 1) mutation number (preferred) or 2) authorized clinical diagnosis. Patients/families seeking membership to the CCHS Network must provide evidence consistent with one of these definitions before their application is accepted.

2) Please provide your mutation configuration (along with all other required information) in the US Registration 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 from the physician who had the testing done. If the CCHS test has not been performed, please see the Genetic Testing Centers page of the Resources section for more information on how and where to undergo genetic testing to confirm a CCHS diagnosis.

* Proceed to Step 3 only if you had the test performed and it came back negative, but you seek membership as a confirmed clinical diagnosis of CCHS.

3) Please submit the completed form below and then (1) download, complete, and submit a Release of Liability (below) and (2) download, print out, and give to your or patient’s physician the Clinician Reporting Form for Clinical Diagnosis of CCHS (below) to provide information regarding a clinical diagnosis.  Once completed return to the CCHS Network.  The release form and clinician reporting form may be accessed via the link below the registration form, and may be submitted either electronically (also below) or via mail (address below). Once we receive your registration form, Release of Liability, and Clinician Reporting form we will contact you about your membership.

Please contact us at mycchsnetwork@gmail.com if you have questions.