Duchenne was added to the Recommended Uniform Screening Panel (RUSP) (RUSP) on December 16, 2025, and in the months since, that decision, coupled with our continued advocacy efforts, have driven meaningful action at the state level.

While the RUSP provides a national recommendation, each state must follow its own process to add new conditions to their newborn screening panel. Across the country, we are seeing strong interest from states as they explore adding Duchenne to their newborn screening programs. These conversations reflect a shared commitment to ensuring earlier diagnosis and better outcomes for children and families. 

Two recent votes show how quickly that momentum is moving:

• In Tennessee, the Genetics Advisory Committee formally voted to approve the addition of Duchenne to the state’s newborn screening panel. Next, they’ll bring together experts to decide how Duchenne screening should work. Once the state’s new lab opens next year, they’ll start testing and validating the process.
• In Nebraska, the Newborn Screening Advisory Committee voted to recommend adding Duchenne to the state’s panel. Next, they’ll move their recommendation forward and seek approval from Governor Jim Pillen, either through legislation or regulatory action.

These are significant steps forward. Both states will now move through the processes required to formally adopt and implement screening, and we will continue working alongside partners in each state to support those efforts at every step of the way.

Looking Ahead to States Starting to Screen

Additional progress is already on the horizon. This June marks the deadline for Massachusetts to begin screening for Duchenne, following legislation signed into law in August 2024. In 2027, we expect Arizona to begin screening as well, along with several other states that have RUSP-alignment laws requiring implementation within two years of a Duchenne’s addition.

Each of these milestones brings us closer to a future where every baby born with Duchenne is identified early, giving families faster access to care, support, and therapeutic options that can meaningfully change the course of the disease.

Get Involved

This progress is a direct result of families, clinicians, researchers, and partners across the Duchenne community raising their voice. And while we celebrate how far we’ve come, there is still more work ahead to ensure equitable implementation of Duchenne newborn screening in every state. Visit the Newborn Screening Action Center to find out where your state stands and what you can do right now to get involved in our advocacy efforts. Your voice can help make newborn screening for Duchenne a reality for every family, no matter where they live.