Parent Resources
"The Tyler For Life Foundation, Inc. is a non-profit voluntary organization whose mission is to improve the lives of babies by preventing mental retardation and death resulting from disorders detectable through newborn screening. A greater understanding and awareness of these tests and disorders will help to prevent unnecessary complications since most can be effectively treated when caught early."
Fatty Acid Oxidation Disorder Support Network
This is a fatty acid oxidation (FAO) disorder support group that publishes an newsletter periodically. "The FOD Newsletter is intended to be used as a resource for families, friends, doctors, researchers, etc. to support, educate, and provide a forum for the sharing of ideas and stories for those whose lives have been touched by a child with a fatty oxidation disorder. Questions are answered, nutrition information is offered, and medical and pharmaceutical updates are discussed".
National Coalition for PKU and Allied Disorders
Centers for Disease Control, Newborn Screening Quality Assurance Program
The Clinical Biochemistry Branch of the Division of Laboratory Sciences operates the Newborn Screening Quality Assurance Program (NSQAP). The NSQAP is a voluntary, non-regulartory program to help state health departments and their laboratories as well as private newborn screening laboratories maintain and enhance to quality of testing.
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This graphic was designed to illustrate the nature of inherited metabolic diseases like MCAD deficiency. There are no outward, physical symptoms or signs of this disease that a pediatrician can detect during an routine well baby visit. There is no way to tell that a member of the family illustrated above has MCAD. However, newborn screening can illuminate this disorder and reveal this disease that lies in the shadows. As illustrated, one member of the family has a different shadow than the others as is the case in a tandem mass spectrometric analysis of newborns where a metabolic profile is clearly different in MCAD as compared to most other newborns. This graphic was adapted and reworked from clipart by D.H. Chace
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