2025-08-nbs

The U.S. Department of Health and Human Services (HHS) is currently reviewing the nomination package for Duchenne muscular dystrophy to be added to the Recommended Uniform Screening Panel (RUSP)—a list of conditions recommended for inclusion in newborn screening programs across the United States.

This is a critical moment for Duchenne families to make their voices heard. Written comments submitted to the Federal Register will help underscore the urgent need for earlier diagnosis of Duchenne and the meaningful impact that newborn screening would have on affected children and their families.

Adding Duchenne to the RUSP would ensure that more babies are diagnosed before symptoms begin, enabling earlier access to care, specialists, and potential treatments, ultimately improving health outcomes and family preparedness.

We urge you to submit your comments before the deadline on September 15th.