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Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children

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Health Resources and Services Administration (HRSA), Department of Health and Human Services (HHS).




In accordance with the Federal Advisory Committee Act, section 1111(g) of the Public Health Service Act, this notice announces that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC or Committee) has scheduled a public meeting. Information about the ACHDNC and the agenda for this meeting can be found on the ACHDNC website at​advisory-committees/​heritable-disorders/​index.html.


Thursday, August 6, 2020, from 10:00 a.m. to 3:00 p.m. Eastern Time (ET) and Friday, August 7, 2020, from 10:00 a.m. to 3:00 p.m. ET.


This meeting will be held via webinar. While this meeting is open to the public, advance registration is required. Please visit the ACHDNC website for information on registration:​advisory-committees/​heritable-disorders/​index.html. The deadline for online registration is 12:00 p.m. ET on August 6, 2020. Instructions on how to access the meeting via webcast will be provided upon registration.

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Alaina Harris, Maternal and Child Health Bureau, HRSA, 5600 Fishers Lane, Room 18W66, Rockville, Maryland 20857; 301-443-0721; or

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ACHDNC provides advice and recommendations to the Secretary of HHS (Secretary) on the development of newborn screening activities, technologies, policies, guidelines, and programs for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. ACHDNC's recommendations regarding inclusion of additional conditions for screening, following adoption by the Secretary, are evidence-informed preventive health services provided for in the comprehensive guidelines supported by HRSA through the Recommended Uniform Screening Panel (RUSP) pursuant to section 2713 of the Public Health Service Act (42 U.S.C. 300gg-13). Under this provision, non-grandfathered group health plans and health insurance issuers offering group or individual health insurance are required to provide insurance coverage without cost-sharing (a co-payment, co-insurance, or deductible) for preventive services for plan years (i.e., policy years) beginning on or after the date that is one year from the Secretary's adoption of the condition for screening.

During the August 6-7, 2020, meeting, ACHDNC will hear from experts in the fields of public health, medicine, heritable disorders, rare disorders, and newborn screening. Agenda items will include updates on the Committee's evidence review process. There will be no Committee votes on recommending new conditions for the RUSP. Agenda items are subject to changes as priorities dictate. Refer to the ACHDNC website for any updated information concerning the meeting. Information about the ACHDNC, a roster of members, as well as past meeting summaries, are also available on the ACHDNC website.

Members of the public will have the opportunity to provide comments. Public participants may submit written statements in advance of the scheduled meeting. Oral comments will be honored in the order they are requested and may be limited as time allows. Requests to provide a written statement or make oral comments to the ACHDNC must be submitted via the registration website by Monday, August 3, 2020, by 12:00 p.m. ET.

Individuals who need special assistance or another reasonable accommodation should notify Alaina Harris at the address and phone number listed above at least 10 business days prior to the meeting.

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Maria G. Button,

Director, Executive Secretariat.

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[FR Doc. 2020-14813 Filed 7-8-20; 8:45 am]