The Department of Health and Human Services has issued a final approval for the addition of Krabbe Disease to the Recommended Uniform Screening Panel (RUSP) for newborns.
Congressman Nick Langworthy said in a statement, “The final decision to add Krabbe Disease to the standard recommended newborn screening panel means that families across the country will have a chance at early detection and intervention, saving their child’s life.”
Hunter’s Hope CEO and grandmother of Hunter Kelly Jacque Waggoner said, “When Hunter was diagnosed with Krabbe Disease in 1997, it was too late to help him. Newborn Screening for Krabbe gives children like Hunter the chance for lifesaving treatment to stop the progression of this horrible disease. We’re deeply grateful that Krabbe Disease is finally on the RUSP, which removes a huge barrier in our state advocacy efforts for Krabbe NBS.”
In May 2023, Langworthy sent a letter to HHS Secretary Xavier Becerra, urging a reconsideration of the decision to include Krabbe Disease in the newborn screening panel. This call for action came in response to a tie vote by the ACHDNC that had blocked the disease’s inclusion last year.
In January 2024, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) under the U.S. Department of Health and Human Services (HHS) voted to add Krabbe Disease to their Recommended Uniform Screening Panel (RUSP) for newborns.
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