Newborn Screening - State and Federal Information

California Testimony Video_SB 224

Hunter's Hope advocates for newborn screening to include Krabbe Disease and similar disorders in every state across the United States.

Currently, New York, Missouri, and Kentucky are the only states screening for Krabbe Disease at birth.  Illinois, New Mexico, New Jersey, Pennsylvania, Ohio and Tennessee have passed legislation to add Krabbe Disease to their newborn screening panels with implementation dates varying by state.

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

In addition to the disorders noted above, we advocate screening for all treatable diseases.  To find out what conditions your state screens for, visit Baby's First Test, the nation's Newborn Screening Clearinghouse.

Federal Newborn Screening Activities

Although each state determines which diseases to include in its newborn screening program, important funding, research and recommendations 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 Krabbe Newborn Screening is a reality nationwide.