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Department of Health and Human Services
Advisory Committee on Heritable Disorders in Newborns and Children
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Advisory Committee on Heritable Disorders in Newborns and Children

Solicitation of Nominations for Membership To Serve on the Advisory Committee on Heritable Disorders in Newborns and Children

The Health Resources and Services Administration (HRSA) is seeking nominations of qualified candidates to be considered for appointment as members of the Advisory Committee on Heritable Disorders in Newborns and Children (Committee). The Committee provides advice, recommendations, and technical information about aspects of heritable disorders and newborn and childhood screening to the Secretary of Health and Human Services. HRSA is seeking nominations of qualified candidates to fill three positions on the Committee.

Proposed term limit: July 2017 - June 2021

Please see the Federal Register Notice (PDF - 175 KB) for instructions on applying.


Secretarial Responses Regarding the Committee's Recommendations to add Mucopolysaccharidosis Type I (PDF - 159 KB) and Adrenoleukodystrophy (X-ALD) (PDF - 137 KB).

Upcoming Meetings

Dates and Times:
May 9, 2016, 9 a.m. to 5 p.m.
May 10, 2016, 9 a.m. to 3 p.m.

Location:                             
5635 Fishers Lane
Terrace Level
Rockville, MD 20852

Registration Deadline:  
Friday, April 29, 11:59 PM ET

Register for the meeting          

Public Comments:  
Advance registration is required to present oral comments and/or submit written comments. Written comments should identify the individual's name, address, email, telephone number, professional or business affiliation, type of expertise (i.e., parent, researcher, clinician, public health, etc.), and the topic/subject matter of comments. To ensure that all individuals who have registered to make oral comments can be accommodated, the allocated time may be limited. Individuals who are associated with groups or have similar interests may be requested to combine their comments and present them through a single representative. No audiovisual presentations are permitted.

For additional information or questions on public comments, please email Alaina Harris.

2016 Meetings

  • May 9-10, 2016 In-person (Location: Rockville, MD) and Via Webcast
  • August 25 and 26, 2016 (Location: Rockville, MD) and Via Webcast
  • November 3 and 4, 2016 (webinar)

The Advisory Committee on Heritable Disorders in Newborns and Children (Committee) was established under the Public Health Service Act, Title XI, ยง 1109 (42 U.S.C. 300b-10), as amended by the Newborn Screening Saves Lives Reauthorization Act of 2014 (P.L. 113-240).

The mission of the Advisory Committee on Heritable Disorders in Newborns and Children 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 Uniform Screening Panel (PDF - 2 pages) that screens for 32 core disorders and 26 secondary disorders; the disorders' selection was based on the Newborn Screening: Towards a Uniform Screening Panel and System (PDF - 329 pages).

The Committee advises the Secretary, U.S. Department of Health and Human Services on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards. Specifically, the committee provides to the Secretary, the following:

  • Advice and recommendations concerning grants and projects authorized awarded or funded related to screening heritable disorders in newborns and children.
  • Technical information to develop Heritable Disorders Program policies and priorities will enhance the ability of the state and local health agencies to provide screening, counseling and health care services for newborns and children who have or are at risk for heritable disorders; and
  • Recommendations, advice and information to enhance, expand or improve the ability of the Secretary to reduce mortality and morbidity from heritable disorders in newborns and children.

The committee was chartered on May 7, 2015.