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ACHDNC Recommends X-ALD

• August 27, 2015 at 4:40pm   |  0 comments

  Tags: 

  ACHDNC

  Adrenoleukodystrophy

  Family Advocates

  HRSA

  HHS

  RUSP

  The Committee Votes 'Yes' to X-ALD

  On August 27, 2015, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) engaged in deep discussion and considered the implications of adding X-linked Adrenoleukodystrophy (X-ALD) to the US newborn screening Recommended Uniform Screening Panel (RUSP).

  Throughout the day, the Advisory Committee heard testimony from individuals and familes affected by X-linked Adrenoleukodystrophy (X-ALD) on their experiences with the condition as well as an extensive presentation of available data. During these conversations and comments, the Committee weighed the harms and benefits of screening for both the newborn and the family overall to form a conclusion regarding the potential addition of X-ALD to the RUSP.
  
  Ultimately, the Advisory Committee voted to send X-ALD to the Secretary of Health and Human Services (HHS) for addition to the US newborn screening RUSP. Next the ACHDNC will send a letter to the Secretary of Health and Human Services. It is ultimately the decision of the Secretary whether or not the condition will be added to the RUSP.

  To learn more about Adrenoleukodystrophy, visit the ALD Condition Page at BabysFirstTest.org. For questions or more information, email Natasha Bonhomme at Natasha@BabysFirstTest.org. 

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