Rare Diseases: Advisory Committee On Heritable Disorders In Newborns And Children
The Health Resources and Services Administration (HRSA) is an agency of the United States Department of Health and Human Services (HHS), located in Rockville, Maryland. HRSA is the main U.S. federal agency with the responsibility of improving access to health care services for Americans who are uninsured, isolated, or medically vulnerable.
HRSA has Federal Advisory Committees, with the purpose of making recommendations or advising on issues relating to programs, responsibilities, and activities of HHS. The Federal Advisory Committee Act, FACA (P.L. 92-463), defines what constitutes a Federal advisory committee and ensures that both the public and Congress are informed about the advisory committees and activities.
One of these Federal Advisory Committees is the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC), chartered in April 2013. DACHDNC’s mission is to:
“ … reduce morbidity and mortality in newborns and children who have, or are at risk for, heritable disorders. The Committee recommends that every newborn screening program include a Recommended Uniform Screening Panel (RUSP) that screens for 31 core disorders and 26 secondary disorders; the disorders’ selection was based on the Newborn Screening: Towards a Uniform Screening Panel and System.”
DACHDNC’s next meeting is scheduled for February 12 – 13, 2015, in Rockville, Maryland :
• February 12th, 8:30 A.M. – 5:00 P.M.
• February 13th, 9:00 A.M. – 3:00 P.M.
The meeting is open to the public and one can either attend in-person or can view the meeting via webinar. Further information will be provided for meeting participants on the Advisory Committee’s website.
Meeting topics identified in the Agenda include:
• US Preventive Services Task Force – Overview & transfer of Newborn Screening (NBS) topics to DACHDNC
• Laboratory Procedures & Standards Subcommittee Update – Timely NBS Projects
• Condition Review Process Overview & Framework for NBS Condition Review
• Condition Review Update For Adrenoleukodystrophy (ALD)
• Final Condition Review of Mucopolysaccharidosis Type 1 (MPS-1):
1. Vote to recommend or not recommend to Secretary the addition of MPS-1 to the Recommended Uniform Screening Panel (RUSP).
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