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 | Professional and Medical Organizations | Federal Agencies
Support/Advocacy Organizations
- EveryLife Foundation for Rare Diseases
- Expecting Health
- Family Voices
- Genetic Alliance
- Global Genes
- March of Dimes
- National Organization for Rare Disorders
- Save Babies Through Screening Foundation
- Screening Technologies and Research in Genetics (STAR-G)
Professional and Medical Organizations
Some professional organizations create statements to share or clarify their position on newborn screening. Organizational statements on newborn screening, if available, are included below.
- American Academy of Family Physicians
- American Academy of Pediatrics
- American College of Medical Genetics and Genomics
- Association of Maternal and Child Health Programs
- Association of Public Health Laboratories (APHL)
- Association of State and Territorial Health Officials
- Association of Women’s Health, Obstetrics, and Neonatal Nurses (AWHONN)
- Child Neurology Society
- Clinical and Laboratory Standards Institute (for health care providers)
- National Society of Genetic Counselors (NSGC)
- Society of Inherited Metabolic Disorders (SIMD) (for health care providers)