North Carolina legislation · 2025-2026 Session
North Carolina H1166: Reorganize & Fund Rare Disease Adv. Council.
Status: Introduced, May 12, 2026
What the bill says
An act revising the composition and duties of the advisory council on rare diseases; transferring the council to the department of health and human services; and appropriating funds to the department of health and human services to cover the operating expenses of the council.
From the introduced text:
A BILL TO BE ENTITLED AN ACT REVISING THE COMPOSITION AND DUTIES OF THE ADVISORY COUNCIL ON RARE DISEASES; TRANSFERRING THE COUNCIL TO THE DEPARTMENT OF HEALTH AND HUMAN SERVICES; AND APPROPRIATING FUNDS TO THE DEPARTMENT OF HEALTH AND HUMAN SERVICES TO COVER THE OPERATING EXPENSES OF THE COUNCIL. The General Assembly of North Carolina enacts: SECTION 1. Part 6 of Article 1B of Chapter 130A of the General Statutes reads as rewritten: "Part 6. Taylor's Law Establishing the Advisory Council on Rare Diseases. "§ 130A-33.65. Advisory Council on Rare Diseases; membership; terms; compensation; meetings; quorum. (a) Short Title. - This Part shall be known as Taylor's Law Establishing the Advisory Council on Rare Diseases. (a1) Establishment of Advisory Council. - There is established the Advisory Council on Rare Diseases within the School of Medicine of the University of North Carolina at Chapel Hill Department of Health and Human Services to advise the Governor, the Secretary, and the General Assembly on research, diagnosis, treatment, and education relating to rare diseases. This Part shall be known as Taylor's Law Establishing the Advisory Council on Rare Diseases. For purposes of this Part, "rare disease" has the same meaning as provided in 21 U.S.C. § 360bb. (b) Advisory Council Membership. - The advisory council shall consist of 19 members to be appointed as …
Sponsors
- Carney, Becky (D, 102) · primary sponsor
- Lambeth, Donny (R, 75) · primary sponsor
- Belk, Mary (D, 88) · primary sponsor
- Price, Renée A. (D, 50) · primary sponsor
- Ball, Cynthia (D, 49)
- Brown, Gloristine (D, 8)
- Brown, Kanika (D, 71)
- Butler, Deb (D, 18)
- Cervania, Maria (D, 41)
- Cohn, Bryan (D, 32)
- Colvin, Mike (D, 42)
- Cook, Amanda P. (D, 60)
Latest actions
- : Re-ref Com On Appropriations
- : Reptd Fav
- : Ref to the Com on Health, if favorable, Appropriations, if favorable, Rules, Calendar, and Operations of the House
- : Passed 1st Reading
- : Filed
Subjects: NAMED LAWS, COUNCILS, BUDGETING, DHHS, HEALTH SERVICES, MEMBERSHIP, PUBLIC, PUBLIC HEALTH
Common questions
- What is H1166?
- H1166 is a bill in the North Carolina Legislature (2025-2026 Session): Reorganize & Fund Rare Disease Adv. Council.
- What does H1166 do?
- In its own words: An act revising the composition and duties of the advisory council on rare diseases; transferring the council to the department of health and human services; and appropriating funds to the department of health and human services to cover the operating expenses of the council.
- What is the status of H1166?
- Introduced as of May 12, 2026. Latest action: Re-ref Com On Appropriations (May 12, 2026).
- Who sponsored H1166?
- Carney, Becky (D, 102), with 11 co-sponsors.
- Where is the official record for H1166?
- On the North Carolina Legislature website: https://www.ncleg.gov/BillLookUp/2025/H1166
Source: official North Carolina record. Tracked by Delilah, AI for legislation across all 50 states and Congress.