U.S. Department of Health and Human Services Adds Duchenne to Recommended Uniform Screening Panel

Parent Project Muscular Dystrophy and Muscular Dystrophy Association Celebrate Monumental Victory for Duchenne Muscular Dystrophy

WASHINGTON, Dec. 16, 2025 /PRNewswire/ -- Today, the U.S. Department of Health and Human Services (HHS) officially added Duchenne muscular dystrophy (Duchenne) to the Recommended Uniform Screening Panel (RUSP), the national list of conditions recommended for newborn screening across all states. This milestone represents a major step forward in early identification and care for children living with Duchenne.

Parent Project Muscular Dystrophy (PPMD), the largest U.S. non-profit leading Duchenne muscular dystrophy care, research, and advocacy efforts, and the Muscular Dystrophy Association (MDA), who for 75 years has led the neuromuscular disease community in finding a diagnosis, obtaining care, and achieving independence, have been proud leaders in this effort, working for over a decade to make newborn screening for Duchenne a reality. "From spearheading state-based pilot programs to leading the RUSP nomination package, our goal has always been clear: ensure that every child has the opportunity for early diagnosis, timely care, and the best possible outcomes," said Lauren Stanford, PPMD's Senior Director of Advocacy.

Adding Duchenne to the RUSP greatly accelerates the timeframe in which newborns across the country will be screened, allowing families to connect with care and neuromuscular experts sooner and access approved therapies and supportive interventions earlier. By reducing the diagnostic delays that have affected Duchenne families for generations, early identification will lead to improved long-term health outcomes.

"This achievement reflects the dedication of hundreds of families, dozens of clinicians and researchers, and many partners who have championed timely detection for years," said Paul Melmeyer, MPP, Executive Vice President, Public Policy and Advocacy at MDA. "It is a testament to the power of collaboration and this community's shared commitment to ensuring every child with Duchenne has the best possible start in life."

PPMD and MDA remain committed to ensuring that this recommendation is implemented effectively and equitably across all 50 states. Families and advocates are encouraged to join ongoing efforts to support state-level implementation.

About Parent Project Muscular Dystrophy

Duchenne is a genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won eight FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube.

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SOURCE Parent Project Muscular Dystrophy (PPMD)