Navigate Newborn Screening is a free education module for individuals who want to learn about the newborn screening process. Start learning today: ACCESS THE NAVIGATE NEWBORN SCREENING MODULEKey Name: E.WE Foundation

Newborn screening is a state public health service that reaches nearly 4 million babies born in the United States annually. An estimated 12,000 babies and their families benefit from newborn screening through the early detection of disease and the delivery of life-saving treatments. Typically performed within 24-48 hours after a baby is born, and in most cases, while still in the hospital, newborn screening has three parts – a blood test, a hearing screen, and a heart screen.

Newborn screening is one of the largest and most successful disease prevention programs in the history of the United States. Although nearly all babies born in the United States every year receive newborn screening, only about two out of three people are aware of newborn screening, and only about one out of three people can correctly identify a definition of newborn screening.

SEPTEMBER IS NEWBORN SCREENING AWARENESS MONTH

We caught up with our friends at Expecting Health while attending the Global Genes 2022 Patient Advocacy Summit in San Diego! Check out this fun newborn screening collaboration video about a baby’s first test!



Newborn Screenings Saves Lives Reauthorization Act
 H.R. 482 / S. 350

The Need: The federal law that supports newborn screening programs expired two years ago. Currently, 33 states do not screen for all of the federally recommended conditions, leaving hundreds of babies undetected and without timely treatment each year. Newborn screening programs are in critical need of funding and resources. And limitations to the current system yield significant delays between the availability of a treatment and implementation of screening, putting infants and children at risk for preventable mortality and disability.

The Proposed Solution: The Newborn Screening Saves Lives Reauthorization Act reauthorizes the Health Resources and Services Administration (HRSA) state grants to expand and improve screening programs, provide educational resources to parents and health care providers, and improve follow-up care for infants with a detected condition. It also Reauthorizes the Centers for Disease Control and Prevention (CDC) grants to states to ensure quality assurance for laboratories and provides language to improve data collection.

Newborn Screening Policy Background

Newborn Screening One Pager

Learn more about our policy priorities!