A Personal Story
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
- 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)
- 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
By Kathy Stagni
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
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) - Western States Genetic Services Collaborative (Region 7)