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Office of Newborn Screening

Additional Resources – Newborn Screening and Genetics

This index provides a listing of available resources related to newborn screening including guidelines, brochures and forms, process documents, and FAQs. The Arizona listing contains family centered resources, non-profits agencies serving infants with metabolic and genetic disorders, those who are deaf or hard of hearing, as well as intergovernmental agencies serving the special needs of families.


Newborn Screening and Genetics

  • National Newborn Screening & Genetics Resource Center (NNSGRC)
    A cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetics Services Branch and the University of Texas Health Science Center at San Antonio, Department of Pediatrics that provides information and resources in the area of newborn screening and genetics.
  • American College of Medical Geneticists (ACMG)
    The professional organization for biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other health care professionals committed to the practice of medical genetics. ACMG provides education, resources and a voice for the medical genetics profession:
    • ACT sheets and confirmatory algorithms for professionals from ACMG describe disorders and actions to be taken after an abnormal newborn screening result.
  • Genetics Home Reference
    A website offering a guide to understanding genetic conditions from the U.S. National Library of Medicine within NIH, HHS.
  • March of Dimes (MOD)
    A non-profit organization advocating pregnancy and baby health (preventing birth defects, premature birth and infant mortality) and universal newborn screening.
  • National Center on Birth Defects and Developmental Disabilities
    Infant topics discuss newborn screening and EHDI, sickle cell disease and thalassemia and Gene Tests, a publicly funded medical genetics information resource hosted at the National Center for Biotechnology Information (NCBI)
  • Human Genetics and Medical Research
    An on-line exhibit for families from the Museum of Medical Research
  • HealthFinder.gov
    A quick guide to healthy living provided by the US Department of Health & Human Services with information for parents about newborn screening, including a toll-free number to call to get services if you don't have insurance.
  • AAP Committee on Genetics
    The American Academy of Pediatrics committee makes recommendations on genetic advances and makes recommendations to state chapters.
  • CDC: Pediatric Genetics
    The Centers for Disease Control and Prevention includes key findings and ways to incorporate family history into your practice.
      CDC Feature on Newborn Screening – Read a mother's story and learn about why newborn screening is so important.
  • Secretary's Advisory Committee on Heritable Disorders in Newborns and Children
    This committee advises the Secretary, U.S. Department of health and Human Services on the most appropriate application of newborn screening technology, policy, standards and more.
  • Newborn Screening Translational Research Network
    The NBSTRN is a resource for technology development within newborn screening and is funded from the National Institutes of Health (NIH).
  • Save Babies Through Screening Foundation
    This non-profit organization is dedicated to advocacy and seeks to create national newborn screening standards.