May 7, 2025

An Update on PPMD’s Continued Strategy for Advancing Duchenne Newborn Screening

On April 3, 2025, the U.S. Department of Health and Human Services (HHS) announced the dissolution of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), an unexpected development that has left a…

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April 21, 2025

Watch: Duchenne Newborn Screening – Next Steps Following ACHDNC Dissolution (Webinar Recording)

Last week, PPMD and the Muscular Dystrophy Association provided insights into the current status of the Duchenne nomination to the federal Recommended Uniform Screening Panel (RUSP) for newborn screening following the dissolution of the Advisory…

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April 4, 2025

The Future of Newborn Screening for Duchenne: Moving Forward After the ACHDNC’s Dissolution

Yesterday, we received news that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) has been terminated, effective immediately. For over 20 years, this committee has served as the guiding body for adding…

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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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