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Advisory Committee on Heritable Disorders in Newborns and Children

 

Notice of Rescheduled Meeting

The in-person meeting originally scheduled for November 7-8, 2019 has been rescheduled to a webinar meeting on Tuesday, September 24, 2019 from 9:30 a.m. to 12 p.m. ET.

Registration

Register for the September webinar meeting HRSA Exit Disclaimer

Deadline to register: Monday, September 23, 2019 by 12 p.m. ET

For technical problems gaining access to the registration website, please email Morgan Pinckney

Public Comments

To submit written comments or request time for an oral comment at the meeting, please register by Thursday, September 19, 2019 by 12 p.m. ET.

To ensure we can accommodate all registered individuals who requested time for oral comments, we may limit the time for comments. We may ask individuals associated with groups or who plan to provide comments on similar topics to combine their comments and present them through a single representative. We do not permit audiovisual presentations.

Agenda

A draft agenda will be available prior to the meeting on the registration website HRSA Exit Disclaimer. A final agenda will be posted on the Committee’s homepage at least 48 hours prior to the meeting.

Upcoming Meetings

  • September 24, 2019 (New Date; Webinar)
  • February 13-14, 2020
  • May 14-15, 2020
  • August 6-7, 2020
  • November 5-6, 2020

 

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, § 11-11 (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:  September 2019