Sign On and Support the Future of the ACHDNC and Newborn Screening (NBS)

Various members of the House of Representatives have drafted a letter to HHS Secretary, Robert F. Kennedy Jr. urging him to continue support of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC).

A portion of the letter is below, and you can read the text in full here:(https://47571729.fs1.hubspotusercontent-na1.net/hubfs/47571729/ACHDNC%20Letter_Formal_to%20HHS.pdf)

We encourage you to contact your representatives and urge them to sign on to this bill by Tuesday, July 29 at 12:00 pm ET.

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In support of the millions of Americans living with rare diseases, we are writing to inquire about the current status and future of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) following reports that your department suddenly terminated the committee in April.1 The ACHDNC, established by law, has played a vital role in promoting early diagnosis and access to care through its newborn screening recommendations. This legacy compels us to ensure the continuation of this critical initiative and evidence-based policymaking at the federal level.