Take comfort in knowing that you are not alone as you begin to navigate life with this rare condition.

If you, or your loved one, has a CCHS diagnosis and want to join the CCHS network please fill out the form below. We accept US and International registrations. Joining the CCHS Network allows you to connect with other CCHS families, who have experienced much of what you are going through now and able to support you as you learn to live with CCHS.