Press Room>Story Ideas

Story Angle Ideas

CAH:  An Incredibly Common yet Relatively Unknown Disorder
Research has shown that as many as one in 100 people are affected by Congenital Adrenal Hyperplasia (CAH) making it the most common genetic disorder identified to date. The devastating effects of CAH are found equally in men and women, but are highly prevalent in certain ethnicities, for example one in 27 Ashkenazi Jews, one in 40 Hispanics and one in 300 people of Italian descent.  Despite this high prevalence, there is little research being done for a cure, public awareness of CAH remains low and there is substantial need for support programs and services for the existing CAH community.  The CARES Foundation is dedicated to improving the lives of families and patients affected by CAH through pro-actively advancing research for a cure, educating the public and healthcare professionals about all forms of CAH, advocating for universal newborn screening, and providing support services and resources vital to the CAH community world-wide.

Newborn Screening Saves Lives
Newborn screening is the most common way infants affected by Classical Congenital Adrenal Hyperplasia (CAH) are first identified.  The screening test for CAH is sensitive, simple and inexpensive. It involves taking one additional drop of blood from the heel of a newborn at birth, along with the other drops taken for the screens for other disorders. The blood is collected on filter paper and allowed to dry, then sent to a laboratory for testing.  Infant females with CAH often come to medical attention because the disorder causes affected females to exhibit recognizable genital abnormalities and therefore receive prompt treatment for adrenal failure and salt-wasting. However, newborn males and females that, due to the extent of their genital abnormalities are miscast as males, show no other outward signs of the disorder and are sent home.  Newborn screening allows for these children to be identified as possibly having CAH before they go into adrenal crisis and present for urgent medical attention at a time when they are beyond resuscitation. A second diagnostic test then is ordered and the diagnosis of CAH either confirmed or denied.  As of July 2008 all 50 of the United States will be screening for CAH at birth.

If you need additional information not available on this site, or would like to speak with a member of the CARES Foundation directly, please contact us at:

CARES Foundation, Inc.
2414 Morris Avenue, Suite 110
Union, NJ 07083
Phone: (973 )912-3895
Toll-free: (866) 227-3737
Fax: 973-912-8990
E-mail: publicaffairs@caresfoundation.org