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