Today marks a monumental victory for the Duchenne community. The U.S. Department of Health and Human Services (HHS) has officially added Duchenne to the Recommended Uniform Screening Panel (RUSP)—the national list of conditions recommended for newborn screening across all states.
PPMD has been at the forefront of efforts to advocate for Newborn Screening for more than a decade, leading the charge to convene key stakeholders across care, industry, and advocacy; pioneering groundbreaking state-based pilot programs to gather essential data; spearheading the submission of the RUSP package as nominator—with the Muscular Dystrophy Association (MDA) as co-nominator; and demonstrating the essential impact of early diagnosis through symposium.
The tireless effort from families, clinicians, researchers, and partners across the Duchenne space have helped us reach this watershed moment. Most importantly, this milestone reflects our community’s shared belief that every individual deserves the earliest possible chance at care, intervention, and hope.
What This Means for Families
Adding Duchenne to the RUSP is a major step toward ensuring that newborns across the country are screened early. Early identification can:
- Connect families with care and neuromuscular experts sooner
- Enable earlier access to approved therapies and supportive interventions
- Improve long-term health outcomes
- Reduce the diagnostic delay that has affected Duchenne families for generations
- Provide families with the information and support they need from day one
A Milestone for the Duchenne Community
This achievement 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 believed in the power of newborn screening.
We will continue to lead newborn screening efforts with the goal of ensuring that this recommendation is implemented effectively and equitably across all 50 states. As we celebrate this victory, there is more work to be done at the state level—and you can join us.
Today, we thank the community, our advocacy partners, and everyone that has so generously given of their time and expertise to get here.
Read PPD’s press release here.
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