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Read. Follow. Verify.North Carolina Reorganizes Rare Disease Advisory Council and Appropriates $250,000 Annually
Last action · March 27, 2025: Ref to the Com on Appropriations, if favorable, Rules, Calendar, and Operations of the House (House action)Sponsors: Becky Carney and 18 others
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What This Bill Would Do
North Carolina House Bill 525 reorganizes the Advisory Council on Rare Diseases by transferring it to the Department of Health and Human Services, expanding its membership to 19, and appropriating $250,000 in recurring annual funds starting July 1, 2025.
Changes where state rare disease policy is housed, alters council appointment structures and member terms, and provides dedicated recurring state funding for council operations.
Who It Would Affect
Groups the bill's text would affect if enacted, as described in the record. Being affected is not a position for or against it.
Advisory Council on Rare Diseases members
Council members experience changes to their appointment terms, governance structure, and administrative housing within state government.
Department of Health and Human Services
The Department assumes administrative responsibility for the rare disease council and receives recurring state appropriations for its operations.
Rare disease patients and caregivers
Patients and caregivers are represented on the restructured council and directly impacted by statewide policy initiatives, awareness programs, and treatment resource development.
Key Facts
- The Advisory Council on Rare Diseases is transferred from the University of North Carolina at Chapel Hill School of Medicine to the Department of Health and Human Services.
- The advisory council is expanded to 19 members appointed by the Secretary of Health and Human Services, legislative leaders, and the Governor.
- The sum of $250,000 is appropriated from the General Fund to the Department of Health and Human Services in recurring funds for both the 2025-2026 and 2026-2027 fiscal years.
- Initial members appointed to the council serve a term of three years, with term limits capping consecutive terms for most members at three.
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- The council must meet at least quarterly following its first meeting and requires a majority of members to constitute a quorum for official actions.
- The council is required to report annually by January 1 to the Secretary, the Governor, the Joint Legislative Oversight Committee on Health and Human Services, and the Fiscal Research Division.
- The School of Medicine of the University of North Carolina at Chapel Hill continues to provide administrative support and other services to the council.
- The funding for the council's operating expenses becomes effective July 1, 2025.
Frequently Asked Questions
Where is the Advisory Council on Rare Diseases relocated under this bill?
How much funding does the bill provide for the council?
How many members serve on the reorganized council?
What else do you want to know?
News Coverage
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Votes, people, money & the original sourceWhere This Stands
Currently in committee. The next step in the legislative lifecycle is Floor Vote.
Procedural history
3 actions- Mar 27, 2025HouseRef to the Com on Appropriations, if favorable, Rules, Calendar, and Operations of the House
- Mar 27, 2025HousePassed 1st Reading
- Mar 26, 2025HouseIntroducedFiled
Version history
Only one version on file - nothing to compare yet. As later stages (committee substitute, engrossed, enrolled) are captured, the redline appears here.
View official text →Lobbying Activity
No state lobbying filings in our records match this bill. Federal lobbying reports (LDA) cover Congress, so they are not listed on state bills.
Full breakdown
Who this bill affects and the strongest case for and against it, written only from the bill’s own text.
Sponsors
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Discoveries
Patterns POLISCOPE noticed across the record. These are observations to investigate, not conclusions.
Administrative Transfer of Advisory Council
The bill shifts oversight of the Advisory Council on Rare Diseases from the University of North Carolina at Chapel Hill School of Medicine to the Department of Health and Human Services while maintaining UNC administrative support.
Connected Entities
Sources
www.ncleg.gov
Analysis Score
0–100- Significance55How much this matters to a regular citizen
- Controversy10Intensity of disagreement among stakeholders
- Entertainment5Compellingness for a non-policy-wonk reader
- Buzz15Current news / social attention level
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