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[Federal Register Volume 90, Number 11 (Friday, January 17, 2025)]
[Notices]
[Pages 5916-5917]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2025-01218]

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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, February 13, 2025, from 10 a.m. to 4 p.m. eastern time 
(ET) and Friday, February 14, 2025, from 10 a.m. to 4 p.m. ET.

ADDRESSES: 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, https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html, not later than 12 
p.m. ET on February 12, 2025. Instructions on how to access the meeting 
via webcast will be provided upon registration.

FOR FURTHER INFORMATION CONTACT: CDR Leticia Manning, Maternal and 
Child Health Bureau, HRSA, 5600 Fishers Lane, Room, Rockville, Maryland 
20857; 301-443-8335; 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 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 February 13-14, 2025, 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) An interim update on the evidence review of metachromatic 
leukodystrophy,
    (2) A presentation on the Newborn Screening Contingency Plan 
framework,
    (3) A panel discussion on genomic sequencing in newborns,
    (4) A presentation on the National Institutes of Health Newborn 
Screening by Whole Genome Sequencing Collaboratory, and
    (5) An update from the ACHDNC Naming and Counting Condition ad hoc 
topic group and potential Committee vote on a list of conditions that 
should be considered for evidence review.
    Although the agenda includes updates relating to evidence review of 
conditions that may lead to future votes, the meeting will not include 
any Committee votes to add conditions 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 or all 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 p.m. ET 
on Thursday, January 30, 2025. 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 CDR Leticia Manning at the address and

[[Page 5917]]

phone number listed above at least 10 business days prior to the 
meeting.

Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2025-01218 Filed 1-16-25; 8:45 am]
BILLING CODE 4165-15-P
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