Our Site Last Updated June 29, 2003

Crigler-Najjar Syndrome is caused by a liver enzyme deficiency

Crigler-Najjar Syndrome (CNS) is an inherited metabolic disorder caused by a liver enzyme deficiency which prevents the usual metabolic breakdown of bilirubin; a normal by-product in our body’s disposal of worn-out red blood cells. 

Children with CNS are unable to eliminate bilirubin from their bodies and therefore must undergo daily 12-hour exposure to special blue lights, just to survive. Without daily treatments, a child would suffer brain damage, muscle and nerve damage and death due to bilirubin toxicity.

A Rare Orphan Disease

Crigler-Najjar is a very rare disease. There are less than 50 known cases in the USA, and less than 200 worldwide. It is named after Dr. Crigler and Dr. Najjar who discovered the disease.  Dr. John F. Crigler is a Special Medical

Two-year-old Melanie has to sleep under intense blue lights to help combat the disease Crigler-Najjar Syndrome

Advisor to the CNA.

The Crigler-Najjar Association

Providing Support and Helping Others

Our group represents approximately 30 families in the U.S.A. who have family members affected by Crigler-Najjar syndrome.  Started in 2002 with a handful of Crigler-Najjar families, our group has grown and expanded to represent all families who are interested in providing support, information and helping others who are less fortunate that may not have the ability to pay for expensive phototherapy lights and medications required just to live.

We offer a newsletter, a parent matching service, an informative website, e-mail list group, and message board.  We link families with each other for support. There is no cost to join or benefit from the CNA.  However Donations are gratefully received

The Crigler-Najjar Association was established both as a support group to assist children and young adults with Crigler-Najjar Syndrome as well as their families and to raise awareness of this rare orphan disease and its effects on those living with the disorder. 

Please feel free to review the information contained in our web site.  Our web site is still evolving and will be updated on a regular basis.

Suggestions or comments regarding our web site may be e-mailed to our webmaster:

rdevere@bellsouth.net

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