Newborn Screening (NBS) is a public health program where infants are screened shortly after birth for a list of conditions not clinically evident early in life. NBS looks for serious developmental, genetic, and metabolic disorders that would not otherwise be detected in time for life-altering treatment. For these disorders, early detection and treatment is essential to preventing irreversible mental or physical disabilities, even death.
NBS does not diagnose diseases, but identifies which babies need additional testing to confirm or rule out these diseases. Although these diseases are very rare, they are treatable if caught early.
Each state determines which diseases they include in their NBS program, resulting in variation across the U.S. That means a child’s chance at a healthy start to life depends on where they were born and the diseases their state screens for. All children deserve the opportunity to be screened for all possible diseases, so that they can have early lifesaving treatment if they have one of these diseases. You can learn more about NBS and which diseases your state screens for by visiting Baby’s First Test which is a federally funded program that serves as a Clearinghouse for NBS information.
If you are pregnant or know someone who is, you may want to consider purchasing a Supplemental NBS Packet. Through Supplemental NBS, you can ensure your newborn is screened for more than 60 disorders at birth, including ALD and Krabbe, regardless of where they are born.
Hunter’s Hope advocates for newborn screening for all possible disorders, including Krabbe, ALD and many others that are not currently on some of the states’ NBS panels. Children with these disorders will die young without early detection and treatment. Please Take Action now and help save the lives of future children born with these devastating diseases.