Membership Statement

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 North America and around the world! Together, we aim to support work toward finding a cure or effective treatment for CCHS within our children’s lifetimes.

Membership Requirements (Please Read)

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 complete the US Registration 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.

US Registration Form

Release of Liability

If a genetic test came back negative for CCHS, you may seek membership as a confirmed clinical diagnosis. Please complete the above registration form as usual, using NA in the “Patient’s Phox2B Mutation” box.  Then download, complete, and submit the Release of Liability form (below). Finally download, print out, and give the Clinician Reporting Form for Clinical Diagnosis to your or the patient’s physician to provide information regarding a clinical CCHS 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.

Download Release of Liability

Download Clinician Reporting Form for Clinical Diagnosis of CCHS

Submit Completed Release and/or Clinician Reporting form

Completed Release of Liability forms may also be submitted via mail:

CCHS Network
Release of Liability/Clinician Reporting Form
71 Maple Street
Oneonta, NY 13820