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Advisory Committee on Heritable Disorders in Newborns and Children

Upcoming Meeting Details:

Date and Time: December 1, 2020: 10:00 a.m. – 2:45 p.m. Eastern Time (ET)

Agenda (PDF - 171 KB)

Location: Virtual

Registration HRSA Exit Disclaimer

Registration Deadline: November 30, 2020 by 12:00 p.m. ET

Public Comments:

We require that you register in advance to present oral comments and/or submit written comments. Register online by November 27, 2020 by 10:00 a.m. ET.

Written comments should identify your 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. We may limit the allocated time to accommodate all individuals who have registered to make oral comments. We may require individuals who are associated with groups or have similar interests 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 ACHDNC@hrsa.gov.

The Advisory Committee on Heritable Disorders in Newborns and Children (Committee) was established under the Public Health Service (PHS) Act, 42 U.S.C. 217a:  Advisory councils or committees (PDF - 215 KB), and Title XI § 1111 (42 U.S.C. § 300b-10) (PDF - 209 KB).

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; they based the disorders' selection 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.

*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:  November 2020