On April 24, 2026, PPMD, in collaboration with the Muscular Dystrophy Association (MDA) and the Little Hercules Foundation (LHF), convened a Duchenne Newborn Screening (NBS) Stakeholder Meeting in Philadelphia. The meeting’s main goal was to gather together industry partners in Duchenne to establish a foundation of understanding of the process of state implementation, and to commit to a shared vision and resource sharing across all partners. The agenda brought together leaders across advocacy, public health, and policy to align on the current landscape and accelerate a shared vision for implementing Duchenne NBS across the United States. 

Discussions highlighted the growing momentum behind Duchenne NBS and the consequent shift in our advocacy strategy from awareness to action. A case study on Cure SMA’s experience with working toward the implementation for spinal muscular atrophy (SMA) demonstrated what is possible when advocacy, industry, and public health are aligned, offering a clear roadmap for Duchenne.

State public health laboratory leaders emphasized that implementation of Duchenne NBS in states across the country will require more than scientific readiness. States must also have the operational infrastructure, workforce capacity, and sustainable funding needed to support screening and follow-up. Federal partners, including representatives from the Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC), outlined existing resources available to help states move forward, and the Chief Policy Officer at the Association of Public Health Laboratories (APHL) reinforced the importance of coordinated strategies and the importance of leveraging different groups and partners, such as the National Governor’s Association to build local relationships to support efforts moving forward.

The meeting concluded with a review of the process to develop an action plan focused on supporting state readiness, strengthening pathways to obtain funding from various resources, and ensuring strong clinical follow-up systems.

Next Steps

Industry partners and other stakeholders will join working groups specific to state efforts, federal advocacy, clinical support, and research/data collection to begin working toward the shared goal of implementing Duchenne newborn screening in all 50 states, ensuring earlier diagnosis and better outcomes for future generations.

How You Can Help

The addition of Duchenne to the federal Recommended Uniform Screening Panel (RUSP) in December 2025 was a monumental victory for our community, and could not have been possible without every advocate who shared their story of the importance of early diagnosis, every clinician who contributed research, and every family who raised their voice. 

Our work is not done yet–we need help from the community to bring Duchenne NBS to every state. If you are interested in getting involved to support our Duchenne NBS efforts, sharing your story, or contacting your state elected officials, please visit PPMD’s Newborn Screening Action Center to learn more.