[Federal Register Volume 89, Number 129 (Friday, July 5, 2024)]
[Notices]
[Pages 55629-55630]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2024-14743]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


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

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

ACTION: Notice.

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SUMMARY: In accordance with the Federal Advisory Committee 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 ACHDNC and the agenda for this meeting can 
be found on the ACHDNC website at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html.

DATES: Thursday, August 8, 2024, from 10:00 a.m. to 4:00 p.m. Eastern 
Time (ET) and Friday, August 9, 2024, from 10:00 a.m. to 2:00 p.m. ET.

ADDRESSES: This meeting will be held in person with webcast options. 
While this meeting is open to the public, advance registration is 
required. Please visit the ACHDNC website for information on 
registration: https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Please register by the deadline of 12:00 p.m. ET 
on Wednesday, August 6, 2024. Instructions on how to access the meeting 
via webcast will be provided upon registration.
    If you are a non-U.S. citizen who would like to attend the August 
meeting in-person, please contact [email protected] by July 22, 2024.

FOR FURTHER INFORMATION CONTACT: Kim Morrison, Maternal and Child 
Health Bureau, HRSA, 5600 Fishers Lane, Room, Rockville, Maryland 
20857; 301-443-6672; or [email protected].

SUPPLEMENTARY INFORMATION: ACHDNC provides advice and recommendations 
to the Secretary of Health and Human Services (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. The ACHDNC reviews and reports regularly on newborn and 
childhood screening practices, recommends improvements in the national 
newborn and childhood screening programs, and fulfills

[[Page 55630]]

requirements stated in the authorizing legislation. In addition, 
ACHDNC's recommendations regarding inclusion of additional conditions 
for screening on the Recommended Uniform Screening Panel, following 
adoption by the Secretary, are evidence-informed preventive health 
services provided for in the comprehensive guidelines supported by HRSA 
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 non-grandfathered 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 1 year from the Secretary's adoption of the 
condition for screening.
    During the August 8-9, 2024, meeting, ACHDNC will hear from experts 
in the fields of public health, medicine, heritable disorders, rare 
disorders, and newborn screening. Possible agenda items may include the 
following topics:
    (1) A presentation on types of screening that are a part of the 
standard of care in a clinical setting;
    (2) An update on the ACHDNC nomination process;
    (3) A presentation on the revisions to the decision matrix and a 
potential vote on whether to adopt the proposed revisions to the ACHDNC 
decision matrix and process; and
    (4) An update on the Metachromatic Leukodystrophy condition 
nomination and a potential vote on whether to move it forward to full 
evidence-based review, which, depending on the strength of the 
evidence, could lead to a future recommendation to add this condition 
to the Recommended Uniform Screening Panel.
    Agenda items are subject to change as priorities dictate. 
Information about ACHDNC, including a roster of members and past 
meeting summaries, is also available on the ACHDNC website.
    Members of the public will have the opportunity to provide comments 
on any of the above agenda items. Public participants may request to 
provide general oral comments and 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 ACHDNC must be 
submitted via the registration website by 12:00 p.m. ET on Thursday, 
July 25, 2024. Written comments will be shared with the Committee prior 
to the meeting so that they have an opportunity to consider them in 
advance of the meeting.
    Individuals who need special assistance or another reasonable 
accommodation should notify Kim Morrison at the address and phone 
number listed above at least 10 business days prior to the meeting.
    Since this meeting occurs in a federal government building, 
attendees must go through a security check to enter the building. Non-
U.S. Citizen attendees must notify HRSA of their planned attendance at 
least 15 business days prior to the meeting to facilitate their entry 
into the building. All attendees are required to present government-
issued identification prior to entry.

Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2024-14743 Filed 7-3-24; 8:45 am]
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