Newborn Screening Resources

A system of organizations, programs, and experts work together to make sure caregivers and health professionals have the information they need to understand newborn screening (NBS). This page features links to many of these organizations. Each one is a trusted source for additional information about NBS.

Some of the sources linked below provide general information about NBS that may be of interest to parents. Others offer information that may be more helpful for health care providers.

If you are looking for resources about a specific health condition identified during the screening process, please visit the Conditions Page.

Support/Advocacy Organizations | Federal Agencies

Support/Advocacy Organizations

• EveryLife Foundation for Rare Diseases
• Expecting Health
  • Baby’s First Test
  • Newborn Screening Family Education Program
  • Navigate Newborn Screening
• Family Voices
• Genetic Alliance
  • Genetic Alliance Statement on Newborn Screening
• Global Genes
• March of Dimes
• National Organization for Rare Disorders
• Save Babies Through Screening Foundation
• Screening Technologies and Research in Genetics (STAR-G)

Federal Agencies

• Centers for Disease Control and Prevention
• Health Resources and Services Administration
  • Advisory Committee on Heritable Diseases in Newborns and Children
    • Recommended Uniform Screening Panel (RUSP)
    • Annual Reports to Congress
  • Secretary's Newborn Screening Reports to Congress
• National Institutes of Health
  • MedlinePlus: Newborn Screening
  • MedlinePlus: Genetics