Office of Newborn Screening

Additional Resources – Newborn Screening Advocates

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
• Disorder Information
• Disorder Support Groups
• Newborn Screening Advocates
• Arizona Resources

Newborn Screening Advocates

• Save Babies Through Screening Foundation, Inc. (SBTS)
  A national non-profit organization devoted exclusively to the advocacy of newborn screening.
• 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.
• American Academy of Pediatrics (AAP)
  The professional organization for pediatricians and pediatric medical sub-specialists that publishes Newborn Screening Information and Fact Sheets. AAP has an Arizona chapter and provides Healthy Children, a website for parents.
• Arizona Hands and Voices
  Hands and Voices is a non-profit parent to apparent support group dedicated to helping families navigate the EHDI system of care.
• CARES Foundation
  An advocacy group serving families of babies identified with Congenital Adrenal Hyperplasia supporting universal newborn screening guidelines.