On Dec. 16, 2025, U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. approved adding Duchenne muscular dystrophy (DMD) and metachromatic leukodystrophy to the Recommended Uniform Screening Panel, according to a recent announcement. The panel guides which conditions should be screened for in all newborns in the U.S.
Most children with DMD are not diagnosed until ages 4 or 5, when muscle loss is already significant. Screening at birth can alert families months or years earlier, opening the door to treatment, physical therapy and monitoring that may slow progression and extend quality of life.
Read more about testing and diagnosis of DMD
“As my uncle has said, ‘although children may be the victims of fate, they will not be the victims of our neglect,’” said Secretary Kennedy. “This action honors that principle. Early screening gives every child a fair chance at timely, effective care, and it delivers families the answers and treatment options they deserve — right when they need them most.”
Beyond medical benefits, early screening can ease the emotional and financial burden on families. A confirmed result in infancy may prevent years of repeated tests, specialist visits and uncertainty that often accompany rare disease diagnosis. It also gives parents time to plan care, seek support and connect with specialists sooner.
The Recommended Uniform Screening Panel is administered by the Health Resources and Services Administration, but each state decides whether to adopt new screenings. Members of Congress and patient advocates praised the decision, urging states to implement the tests quickly. Federal officials said they will support states as they move toward adoption, emphasizing that earlier knowledge can reshape the lives of children and families facing rare diseases.
The other disease added to the panel, metachromatic leukodystrophy, is a rare inherited disorder that damages the nervous system and can lead to rapid loss of movement, speech and cognitive skills. Like DMD, symptoms are often recognized only after substantial decline. Early detection through newborn screening can identify children before symptoms appear, when available therapies may have the greatest impact.
Sign up here to get the latest news, perspectives, and information about DMD sent directly to your inbox. Registration is free and only takes a minute.
