Register with the CCHS Network

CCHS Patients & Immediate Family or Physicians only

Registered families and patients can use the discussion board and access the family contact info and past newsletters located on our secure family pages.

We are committed to educating and supporting CCHS families and caregivers around the world. We provide information and support to CCHS patients and parents. To do so, we do 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 patients, 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 or for those who may doubt their dx, we strongly recommend having the blood testing done. (Go to the Diagnostics page.) Our 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.

For families with new babies who are suspected of having CCHS but do not yet have a confirmed dx, we encourage you to peruse our pages and also read some of the CCHS literature on the Literature page.

If you have or your child has CCHS gene test results, we ask that you provide us your mutation number below. We want to advise you more accurately and work to link levels of CCHS affectedness with individual medical problems. This furthers our knowledge of 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 our families. The CCHS Network Family Pages (and website) are served by a double layer of security to protect patient identity and provide registrants-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)(3) 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 our Treasurer, or, you can donate via the Pay Pal button above:
Al Pope, CCHS Treasurer
11201 Fairfield
Livonia, MI 48150

NOTE: We use contributions to support our website, produce and distribute occasional CCHS Family Newsletters, fund info packets for new families, and organize educational conferences. Monies are also used 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 the Network or doing the work of the Network 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 Mary Vanderlaan or to Advisory Board members listed on our site.

Registration

If you were previously registered on our old webpage, you will need to register below to get a new password