Our Coalition joined with more than 80 organizations, led by the March of Dimes, to call on policymakers to include the “Newborn Screening Saves Lives Reauthorization Act of 2021” (H.R. 482) as part of the FY22 omnibus spending bill in support of improving the health of babies born with rare diseases.
Each year thousands of babies are born with rare diseases that may not be apparent at birth. Fifty years ago, these infants’ disorders would have gone undetected until symptoms appeared, leading to possible death or lifelong disability. Today, a simple set of newborn screening tests performed at birth can detect these life-threatening illnesses before any symptoms begin, allowing crucial time for early diagnosis and treatment.
Click here to read the full letter submitted to Congressional leadership.
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