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  • Newborn Screening

Exceptional Parent Article

By Kathy Stagni

 

 

 

 

 

 

 

Newborn Screening & Parent Support Groups

Oral testimony presented by Ms. Kathy Stagni, Executive Director of the Organic Acidemia Association and parent of an adolescent with propionic acidemia, a metabolic disorder, to the Health and Human Services Policy Committee of the Minnesota House of Representatives on March 19, 2003

 

 

Newborn Screening Websites

• What Does Your State Screen For? Newborn Screening in the US by State
• Baby's First Test - Parent Information on Newborn Screening
• Preserving the Future of Newborn Screening - Education on Preserving the future of newborn screening
• Baylor Health Care Center - Dallas Institute for Metabolic Disease (Request a newborn screening kit)
• Mayo Clinic - Rochester, MN - Newborn screening
• National Newborn Screening & Genetics Newborn Center
• March of Dimes
• Centers for Disease Control & Prevention (CDC) Newborn Screening
• American College of Medical Genetics - Newborn Screening: Toward A Uniform Screening Panel and System
• Sudden Infant Death Syndrome (SIDS)
• Expanded Newborn Screening using Mass Spec
• Sudden Unexplained Death in Childhood (SUDC)
• Lily's Foundation
• Kennedy Krieger Institute Mass Spec Lab
• Newborn Screening
• Save Babies Through Screening
• Newborn Screening by Tandem Mass Spectrometry for Medium-Chain Acyl-CoA Dehydrogenase Deficiency: A Cost-Effectiveness Analysis Abstract of Article from Pediatrics, Nov 2003
• Minnesota Newborns At Risk - Press Release March 25, 2003
  

National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups

http://genes-r-us.uthscsa.edu/resources/genetics/StatePages/genetic_region_map.htm

In 2004, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to establish seven Regional Genetic Service and Newborn Screening Collaborative Groups (RCs) and a National Coordinating Center (NCC) as part of on-going efforts to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services. The NCC is formed as a partnership with the GSB/MCHB/HRSA through a cooperative agreement with the American College of Medical Genetics (ACMG). The NCC is organized around a central office and an Advisory Committee. The Advisory Committee includes the seven RCs and representatives of national organizations that serve as resources to the NCC and the RCs.

• New England Regional Genetics Group (Region 1)
• New York Mid-Atlantic Consortium for Genetic and Newborn Screening Services (Region 2)
• The Southeast Regional Genetics Group (Region 3)
• The Great Lakes Genetics Collaborative (Region 4)
• The Heartland Regional Genetics and Newborn Screening Collaborative (Region 5)
• The Mountain States Regional Collaborative Center (Region 6)
• Western States Genetic Services Collaborative (Region 7)