CA_SB224_TestimonyNewborn Screening – State and Federal Information

Hunter’s Hope advocates newborn screening (NBS) for all possible disorders at birth, including Krabbe, ALD and similar disorders.

For diseases like Krabbe and ALD, they must be diagnosed early to save children’s lives. Therefore, it is critical all infants are screened for these diseases at birth.

Currently, New York, Missouri and Kentucky are the only states screening all their babies for Krabbe Disease at birth. Ohio offers Krabbe NBS but parents must request it. Illinois, New Mexico, New Jersey, Pennsylvania, Tennessee and Louisiana have passed legislation to add Krabbe to their newborn screening panels with implementation dates varying by state.

Find out what’s happening in your state on our Take Action page.

To find out what conditions your state screens for, visit Baby’s First Test.

Federal Newborn Screening Activities

Although each state determines which diseases to include in its newborn screening program, important funding, research and advancements are made through various federal agencies.

Hunter’s Hope is actively involved in several of these national newborn screening efforts.  We serve on the Standing Committee and Bioethics Committee of the Newborn Screening Translational Research Network (NBSTRN).

Through our active involvement in both state and federal newborn screening efforts, Hunter’s Hope is working hard to ensure expanded newborn screening is a reality nationwide.