Billing Code: 4165-15
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.
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/advisorycommittees/heritable-disorders/index.html.
DATES: Thursday, August 8, 2024, from 10:00 AM to 4:00 PM Eastern Time (ET) and Friday,
August 9, 2024, from 10:00 AM to 2:00 PM 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/heritabledisorders/index.html. Please register by the deadline of 12:00 PM 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 ACHDNC@hrsa.gov 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
ACHDNC@hrsa.gov.

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 evidenceinformed 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 nongrandfathered 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 PM 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: 7/3/2024 8:45 am; Publication Date: 7/5/2024]