Connect with Us
facebook "f" logo Hunter's Hope on Twitter youtube logo

Newborn Screening - State and Federal Information

California Testimony Video_SB 224

Hunter's Hope advocates screening for six disorders called Lysosomal Storage Disorders (LSDs) in states across the U.S. - Krabbe, Pompe, Gaucher, Niemann-Pick, Fabry and Hurler Syndrome.

These disorders can be cost-effectively screened together and must be diagnosed early to save children's lives. Therefore, it is critical all infants are screened for LSDs at birth.

Currently, New York and Missouri are the only states screening for Krabbe Disease at birth.  Illinois, New Mexico and New Jersey have passed legislation to add LSDs 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 Lysosomal Storage Disorders noted above, we advocate screening for all treatable diseases.  This includes a minimum of the 56 disorders on the Secretary Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) recommended screening panel.

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 Education and Training Subcommittee of the SACHDNC. We also serve on the Standing Committee and Bioethics Committee of the Newborn Screening Translational Research Network (NBSTRN). You can help make sure that newborn screening is able to continue to function and grow through these programs and more by asking your U.S. Representative to support the NBS Saves Lives Reauthorization Act.

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.