August 10, 2023

PPMD’s RUSP nomination package for Duchenne passes first hurdle in federal committee vote

PPMD’s nomination package to add Duchenne to the Recommended Uniform Screening Panel (RUSP) passed the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Nomination and Prioritization vote today! This decision marks another exciting…

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July 5, 2023

Duchenne Newborn Screening milestone—first state with universal newborn screening for Duchenne!

For more than a decade, PPMD has worked towards newborn screening (NBS) for Duchenne, including initiating a pilot study in New York State and developing a nomination package for federal review as a recommended condition…

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May 31, 2023

Update on PPMD’s newborn screening efforts

For the past decade, PPMD has been leading efforts for newborn screening for Duchenne. As part of that process, PPMD, with co-sponsor Muscular Dystrophy Association (MDA), submitted a nomination package to the Recommended Uniform Screening…

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March 24, 2023

Pat Furlong Advocates in Support of Adding Duchenne to the Ohio Newborn Screening Panel

On March 23, PPMD’s Founding President & CEO Pat Furlong addressed the Ohio House Finance Subcommittee on Health and Human Services in support of legislation that would add Duchenne to the Ohio Newborn Screening Panel….

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February 10, 2023

Update on PPMD’s Newborn Screening Efforts: ACHDNC Advises Additional Information Needed

With a robust therapeutic pipeline, regulatory infrastructure, and clinical care network and guidelines in place, PPMD has been building the infrastructure and preparing for the implementation of newborn screening for Duchenne for almost a decade….

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February 10, 2023

Update on PPMD’s Newborn Screening Efforts: ACHDNC Advises Additional Information Needed

With a robust therapeutic pipeline, regulatory infrastructure, and clinical care network and guidelines in place, PPMD has been building the infrastructure and preparing for the implementation of newborn screening for Duchenne for almost a decade….

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August 16, 2022

Eliminating the Diagnostic Odyssey: PPMD Studies Published Featuring Family & Care Provider Perspectives

PPMD has long supported efforts to reduce the age of diagnosis, eliminate the diagnostic odyssey, and make diagnosis equitable in Duchenne. Most recently, we reached an incredible milestone with the submission of a nomination package…

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June 30, 2022

PPMD Submits RUSP Nomination Package for Duchenne Muscular Dystrophy

PPMD’s Duchenne Newborn Screening efforts have reached an incredible milestone. Today, PPMD submitted a nomination package to add Duchenne to the Recommended Uniform Screening Panel (RUSP), requesting Duchenne be a condition recommended for nationwide Newborn…

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October 6, 2021

PPMD Completes Successful Pilot in Newborn Screening for Duchenne Muscular Dystrophy

PPMD’s Newborn Screening Pilot recently completed two years of ground-breaking recruitment. More than 36,000 families consented to participate and more than 36,000 babies have been screened for Duchenne Muscular Dystrophy in New York State. As…

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November 10, 2020

PPMD’s Ground-Breaking Effort: An Update After One Year of Our Newborn Screening Pilot for Duchenne

14,000 Babies Tested in Partnership with New York State and NBSTRN; Data Presented at Association of Public Health Laboratories Newborn Screening Virtual Symposium Parent Project Muscular Dystrophy (PPMD) today announced that our Newborn Screening Pilot…

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