March 14, 2025

PPMD Hosts Duchenne Early Intervention Symposium

This May, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) plans to vote on whether to add Duchenne to the Recommended Uniform Screening Panel (RUSP) for newborn screening. To support a push…

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September 4, 2024

Introducing PPMD’s Newborn Screening Action Center: A Hub for Advocacy and Education

We are thrilled to announce the launch of PPMD’s Newborn Screening Action Center, a powerful resource designed to both educate and empower you as we work to ensure that every baby, in every state, has…

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August 23, 2024

Duchenne Added to Massachusetts Newborn Screening Panel

PPMD is excited to announce another significant milestone: Massachusetts has officially approved the addition of Duchenne to the state’s newborn screening panel! The addition of Duchenne to the Commonwealth’s newborn screen panel was included as…

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June 14, 2024

Newborn Screening for Duchenne: PPMD’s Collaborative Future Planning Efforts

On Saturday, June 8th, PPMD convened a vital meeting of physicians, physical therapists, genetic  counselors, data scientists, and other key opinion leaders to discuss the development of data infrastructure and care planning for newborns that…

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May 9, 2024

Updates from the ACHDNC Meeting and Next Steps for Duchenne Newborn Screening

Members of the PPMD community provided testimony today during the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) quarterly meeting, voicing support for adding Duchenne to the Recommended Uniform Screening Panel (RUSP) for…

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May 6, 2024

WATCH: Community Progress in Duchenne Newborn Screening (Webinar Recording)

PPMD, in collaboration with the Muscular Dystrophy Association (MDA), the EveryLife Foundation for Rare Diseases, and the Little Hercules Foundation (LHF), recently hosted a webinar on the background, history, and next steps for Duchenne Newborn…

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April 29, 2024

PPMD Awards $250,000 to Support Clinical Research Network for Duchenne Babies Identified by Newborn Screening

PPMD is excited to announce a $250,000 award to Bo Hoon Lee, MD, from the University of Rochester to support  the development of a clinical research network for Duchenne babies identified through newborn screening efforts…

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April 22, 2024

Ohio to Begin Screening Newborns for Duchenne

PPMD is excited to announce another significant milestone in Duchenne newborn screening: Ohio will be the first state to screen all babies for Duchenne! More than 129,000 babies are born in Ohio every year, and…

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April 15, 2024

Duchenne Siblings Study Published: Assessing Early Diagnosis from the Perspective of Parents with Multiple Children Diagnosed with Duchenne

For more than a decade, PPMD has been at the forefront of advocating for Duchenne newborn screening. In 2023, we expanded our ongoing work in the space by conducting a parent survey to build evidence…

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April 9, 2024

60+ Experts Unite to Author Consensus Statement Championing Duchenne Newborn Screening

Over 60 leading experts in genetics, pediatrics, neurology, and public health advocates have authored a consensus statement in support of implementing Duchenne newborn screening. Key points of the consensus statement include: Timely Intervention: Early screening…

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