As our Mission statement says, we are committed to educating and supporting CCHS families and caregivers around the world. We provide information and services to CCHS patients and CCHS parents and expect and assume that your CCHS diagnosis is accurate and has been confirmed either by gene testing, or, for our pre-gene testing, older CCHS families, by continuing confirmation of the CCHS diagnosis by regular medical monitoring and follow-up. Today, and since its development in 2003, gene testing routinely confirms the CCHS diagnosis in most patients. For those who have not been tested and may doubt their older dx, we would strongly recommend having the blood testing done. (Information on gene testing is provided on this website and in literature linked to these pages.) Our services and discussions about CCHS assume that we are dealing with patients and families who by earlier diagnosis and ongoing medical care are assured that they have classic CCHS.

Upon request by families with new babies who are suspected of having CCHS, we can provide an early education packet about the diagnosis while the family awaits final test results.

If you or your child have CCHS gene test results, we ask that you provide us that information below so that we can work over time to link levels of CCHS affectedness with individual medical problems. This furthers our knowledge of CCHS and will eventually help us provide parents and patients with more accurate information about prognoses in CCHS.

Please take a moment to tell us about yourself on the form below. Be assured that the information submitted is confidential and you will not be contacted by any person or organization other than the CCHS Family Network. The information you provide helps us see who we are reaching and how to better serve families with this rare disorder (and their physicians). The CCHS Network Family Pages ( and website) are served by a double layer of security to protect patient identity and provide membership-only access to family discussions on our Discussion Board.

We will respond quickly to your registration with information about how to access our secure pages and will provide you passwords for moving through our website.

Donations To Support Our Work of Education and Outreach
We are registered as a tax exempt, not for profit organization (501 c) in the United States. Contributions are tax deductible for US citizens. Checks or Money Orders (in US currency) should be made out to CCHS Network and sent to: Al Pope, CCHS Treasurer 11201 Fairfield, Livonia, MI 48150.

We use contributions to produce and distribute our CCHS Family Newsletters, to fund info packets for new families and physicians, and to organize educational conference for families and care-givers. Monies are also used to sustain our website, to fund our phone line and to support CCHS survey research (from which several articles have been published in medical journals). No one associated with or doing the work of the Network is or has ever been paid for services rendered. We are a family/member run organization that was founded by Network Director, Mary Vanderlaan, in 1989. Please direct any questions concerning the use of donations to board members listed on our site.