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NORD CEO Statement on the Addition of Metachromatic Leukodystrophy (MLD) and Duchenne Muscular Dystrophy (DMD) to the Recommended Uniform Screening Panel

Published December 16, 2025 by NORD

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The National Organization for Rare Disorders (NORD) applauds the Department of Health and Human Services (HHS) for adding metachromatic leukodystrophy (MLD) and Duchenne muscular dystrophy (DMD) to the Recommended Uniform …

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NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children

Published April 4, 2025 by NORD

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The sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) raises serious concerns for the rare disease community and families nationwide. The ACHDNC is a critical part of the U.S. newborn screening system, providing guidance to the Secretary of the Department of Health and Human Services (HHS) on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines, and standards.

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National Organization for Rare Disorders (NORD) Issues New Report on Lifesaving Newborn Screening Programs

Published February 10, 2025 by NORD

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NORD offers comprehensive review on statewide practices related to  screening sample retention, provides policy recommendations February 10, 2025, Washington, D.C. — The National Organization for Rare Disorders (NORD®) today published a …

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Newborn Screening: The HCP Perspective on the Importance of Confirmatory Testing and Collaboration

Published September 29, 2020 by NORD

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SCREENING NEWBORNS FOR RARE DISEASES: THE IMPORTANCE OF CONFIRMATORY TESTING AND COLLABORATION By José Abdenur, MD and Rebekah Bressi, CGC ”Newborn screening is one of the most successful public health …

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