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Duchenne advocates urge newborn screening to speed diagnosis and treatment access
Summary
Family advocates told the House Health Committee that adding newborn screening for Duchenne muscular dystrophy would find affected infants earlier, avoid harmful physical interventions and accelerate access to approved treatments.
Parents and patient advocates urged the House Health Committee on Friday to add Duchenne muscular dystrophy to Pennsylvania’s newborn screening panel so affected children can start treatments earlier and avoid harmful interventions.
"I have a 21 year old son, named Elijah who lives with Duchenne muscular dystrophy," Amy Akins, director of patient access at the Little Hercules Foundation and mother of a person with DMD, told the…
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