HB 525 North Carolina House · 2025-2026 Session

Reorganize and Fund Rare Disease Advisory Council.

HB 525 reorganizes North Carolina's Advisory Council on Rare Diseases by moving it from the University of North Carolina at Chapel Hill School of Medicine to the Department of Health and Human Services (DHHS) and appropriates funds to cover its operating costs. The council, composed of 19 diverse members including patients, caregivers, medical professionals, researchers, and industry representatives, directly serves the rare disease community by advising state leaders on research, treatment, and policy. Key provisions include requiring the council to coordinate statewide efforts on rare disease awareness, incidence tracking, and policy initiatives, and to submit annual reports to the Governor, DHHS, and legislative committees. This bill formalizes DHHS oversight of the council and ensures dedicated funding for its operations, streamlining coordination with state health programs.
Bill status in committee 1 of 4 stages cleared
Introduction
Mar 2025
Committee Review
Floor Vote
Governor
Introduced Mar 26, 2025 Last action Mar 27, 2025
Maddy AI version diff · 1 comparison

What changed between versions

Filed Edition 1 · 4 edits
MODERATE
The bill underwent significant formatting and organizational changes during its transition from filed to Edition 1. The primary substantive change is the addition of new sponsors (Representatives Lambeth, Belk, and Cunningham) to the bill, while the original sponsor Representative Carney remains. The bill text itself appears largely unchanged in terms of policy provisions, with the main differences being the reorganization of member categories and the removal of certain formatting elements like the original bill number.
TECHNICAL

Added three new primary sponsors to the bill: Representatives Lambeth, Belk, and Cunningham, expanding the bipartisan support for the legislation.

Reorganized the bill header and formatting, moving from a traditional filed format to a more structured edition format with updated bill number H525-v-1.

Removed the original bill tracking number DRH10161-MGa-124 and replaced it with the new edition identifier H525-v-1.

Reordered the advisory council member categories, moving the researcher category from position f to position 1, and renumbering subsequent categories accordingly.

Floor votes

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Full legislative history

Actions timeline

Total actions
3
Key actions
0
Committee
1
Mar 27, 2025
Committee
Ref to the Com on Appropriations, if favorable, Rules, Calendar, and Operations of the House
lower
Mar 26, 2025
Introduced
Filed
lower
3 primary · 16 co-sponsors

Sponsors