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Advisory Committee on Heritable Disorders in Newborns and Children

Upcoming Meeting Details:

Dates and Times:
Thursday, November 1, 2018, 10:30 a.m. to 5:30 p.m. (ET)
Friday, November 2, 2018, 9:30 a.m. to 2:30 p.m. (ET)

Location:
In-Person and Webcast
5600 Fishers Lane
5th Floor Pavilion
Rockville, MD 20857

Registration Deadline:
Monday, October 29, 2018, 12:00 PM (ET)

To register, please go to http://www.achdncmeetings.org/registration/ HRSA Exit Disclaimer

For technical problems gaining access to the registration website, please email Morgan Pinckney at mpinckney@lrginc.com.

If you are a non-U.S. citizens who would like to attend in person, please contact Ann Ferrero at aferrero@hrsa.gov by Thursday, October 18, 2018, 12:00 p.m. (ET).

Public Comments:
To submit written comments or request time for an oral comment at the meeting, please register online HRSA Exit Disclaimer by October 26, 2018 by 12:00 pm (ET). 

To ensure all registered individuals who requested time for oral comments are accommodated, 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. 

Audiovisual presentations are not permitted.

Contact:
For additional information, questions on public comments, or if you need special assistance, please call 301-443-3999 or send an email to Ann Ferrero (AFerrero@hrsa.gov).

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:  September 2018