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Advisory Committee on Heritable Disorders in Newborns and Children

MEETING UPDATE

Please note the next Committee meeting is tentatively scheduled as a 1-day WEBINAR on February 7, 2019 pending the publication of a meeting announcement in the Federal Register.

Due to the lapse in appropriations for the Office of the Federal Register, required publication of upcoming Advisory Committee meetings has been interrupted. In the event that the lapse in appropriations prevents the Office of the Federal Register from publishing the notice for the upcoming Advisory Committee meeting on or before January 23, 2019, the meeting will be cancelled or postponed.

Further information about the next Advisory Committee meeting will be posted on the Committee’s website not later than January 23, 2019 and notice of the meeting will be published in the Federal Register.  Please continue to check the Committee’s website for updates.  If you have further questions, please contact Catharine Riley, Designated Federal Official, at criley@hrsa.gov.

Organizational Representatives Nominations

HRSA is seeking nominations from organizations to send a representative to be a liaison to the Advisory Committee on Heritable Disorders in Newborns and Children.

Applications must be received by Thursday, January 17, 2019. See the application instructions* (PDF - 213 KB) for more information.

 

Future Meeting Dates

  • February 7, 2019 — Webinar only (TENTATIVE)
  • April 23-24, 2019
  • August 1-2, 2019
  • November 7-8, 2019

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

The Committee recommends that every newborn screening program include a Uniform Screening Panel (PDF - 12 MB)* that screens for 35 core disorders and 26 secondary disorders; the disorders' selection was based on the Newborn Screening: Towards a Uniform Screening Panel and System (PDF - 191 KB).

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.

 

*Individuals using assistive technology may not be able to fully access information in this file. For assistance, please email HRSAAccessibility@hrsa.gov.

Date Last Reviewed:  December 2018