Blog

Build Your Own Care Binder at PPMD’s 30th Annual Conference

PPMD is excited to share that at our 30th Annual Conference, taking place June 27-29, 2024, in Orlando, Florida, the PPMD Care team will host a “DIY Care Binder” station where families can create a…

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Consensus Statement Featuring Expert Insights from PPMD’s Certified Duchenne Care Centers on Access to Novel Therapies for Duchenne Published

PPMD is excited to share that a consensus statement providing insights from clinicians who care for patients with Duchenne into the current therapeutic landscape and access to novel therapies for Duchenne has been published in…

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Mapping Out a Path Forward: PPMD Convenes Representatives from 21 Academic Centers and 11 Industry Partners for 2024 Cardiac Care Workshop

Last week, PPMD held the 2024 Cardiac Care Workshop in Baltimore, Maryland, which included 40 academics and professionals and representatives from 11 industry partners to discuss how to move beyond the current state of cardiac…

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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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PPMD Hosts 2024 Cardiac Workshop, May 9-10

PPMD is excited to bring together experts in the cardiac field, spanning clinicians and researchers, to the third annual PPMD Cardiac Workshop, May 9-10, 2024 to delve into current and emerging issues in cardiac care…

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Comprehensive Genetic Counseling Resource for Dystrophinopathies Published: A Collaborative Effort by PPMD and Expert Genetic Counselors

PPMD is pleased to share that a new genetic counseling practice resource for dystrophinopathies, including Duchenne and Becker muscular dystrophy and carriers, has been published in the Journal of Genetic Counseling. PPMD Certified Genetic Counselors,…

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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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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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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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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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