North Carolina HB 525: Reorganize and Fund Rare Disease Advisory Council.

Bill Text

GENERAL ASSEMBLY OF NORTH CAROLINA
SESSION 2025
H 1
HOUSE BILL 525

Short Title: Reorganize & Fund Rare Disease Adv. Council. (Public)
Sponsors: Representatives Carney, Lambeth, Belk, and Cunningham (Primary Sponsors).
For a complete list of sponsors, refer to the North Carolina General Assembly web site.
Referred to: Appropriations, if favorable, Rules, Calendar, and Operations of the House
March 27, 2025
*H525-v-1*
A BILL TO BE ENTITLED 1
AN ACT REVISING THE COMPOSITION AND DUTIES OF THE ADVISORY COUNCIL 2
ON RARE DISEASES; TRANSFERRING THE COUNCIL TO THE DEPARTMENT OF 3
HEALTH AND HUMAN SERVICES; AND APPROPRIATING FUNDS TO THE 4
DEPARTMENT OF HEALTH AND HUMAN SERVICES TO COVER THE OPERATING 5
EXPENSES OF THE COUNCIL. 6
The General Assembly of North Carolina enacts: 7
SECTION 1. Part 6 of Article 1B of Chapter 130A of the General Statutes reads as 8
rewritten: 9
"Part 6. Taylor's Law Establishing the Advisory Council on Rare Diseases. 10
"§ 130A-33.65. Advisory Council on Rare Diseases; membership; terms; compensation; 11
meetings; quorum. 12
(a) Short Title. – This Part shall be known as Taylor's Law Establishing the Advisory 13
Council on Rare Diseases. 14
(a1) Establishment of Advisory Council. – There is established the Advisory Council on 15
Rare Diseases within the School of Medicine of the University of North Carolina at Chapel Hill 16
Department of Health and Human Services to advise the Governor, the Secretary, and the General 17
Assembly on research, diagnosis, treatment, and education relating to rare diseases. This Part 18
shall be known as Taylor's Law Establishing the Advisory Council on Rare Diseases. For 19
purposes of this Part, "rare disease" has the same meaning as provided in 21 U.S.C. § 360bb. 20
(b) Advisory Council Membership. – The advisory council shall consist of 19 members 21
to be appointed as follows: 22
(1) Upon the recommendation of the Dean of the School of Medicine of the 23
University of North Carolina at Chapel Hill, the The Secretary shall appoint 24
members to the advisory council as follows:the following 15 members: 25
a. A physician Two physicians licensed and practicing in this State with 26
experience researching, diagnosing, or treating rare diseases. 27
b. A medical researcher with experience conducting research concerning 28
rare diseases. 29
c. A One registered nurse or advanced practice registered nurse licensed 30
and practicing in the State with experience treating rare diseases. 31
d. One rare diseases survivor. 32
e. One member who represents a rare diseases foundation. 33

General Assembly Of North Carolina Session 2025
Page 2 House Bill 525-First Edition
f. One representative researcher from each an academic research 1
institution in this State that receives any grant funding for rare diseases 2
research. 3
g. One parent of a childhood rare disease survivor. 4
h. One hospital administrator, or the hospital administrator's designee, 5
representing a hospital in the State that provides care to persons 6
diagnosed with a rare disease. 7
i. Two persons age 18 or older who have been diagnosed with a rare 8
disease. 9
j. Two persons age 18 or older who are, or were previously, caregivers 10
to a person diagnosed with a rare disease. 11
k. One representative of a rare disease patient organization that operates 12
in the State. 13
l. One pharmacist licensed and practicing in this State with knowledge 14
and experience regarding drugs used to treat rare diseases. 15
m. One representative of the life sciences, biotechnology, or 16
biopharmaceutical industry that either focuses on research efforts 17
related to the development of therapeutic products for persons 18
diagnosed with a rare disease or has demonstratable understanding of 19
the path to commercialization of such products. 20
n. Two representatives of a health benefit plan or health insurer, at least 21
one of whom is a representative of a North Carolina Medicaid 22
Managed Care health plan. 23
o. One genetic counselor with experience providing services to persons 24
diagnosed with a rare disease or caregivers of persons diagnosed with 25
a rare disease. 26
(2) The chairs of the Joint Legislative Oversight Committee on Health and Human 27
Services, or the chairs' designees, shall serve on the advisory council. A 28
member of the advisory council who is designated by the chairs of the Joint 29
Legislative Oversight Committee on Health and Human Services may be a 30
member of the General Assembly. 31
(2a) One member appointed by the President Pro Tempore of the Senate. 32
(2b) One member appointed by the Speaker of the House of Representatives. 33
(2c) One member appointed by the Governor. 34
(3) The Secretary, or the Secretary's designee, shall serve as an ex officio, 35
nonvoting member of the advisory council. 36
(c) Members Length of Terms. – All initial members appointed pursuant to subsection 37
(b) of this section to the advisory council shall serve for a term of three years, and no member 38
initial