HB 1166 North Carolina House · 2025-2026 Session

Reorganize and Fund Rare Disease Advisory Council.

HB 1166 reorganizes the North Carolina Advisory Council on Rare Diseases by moving it from the University of North Carolina at Chapel Hill to the Department of Health and Human Services. The bill establishes a 19-member council with diverse representation, including physicians, researchers, patients, caregivers, and industry representatives, who will advise state officials on research, diagnosis, treatment, and education for rare diseases. It also provides funding for the council's operating expenses and sets rules for membership terms, meetings, and the selection of a chair.
Bill status in committee 1 of 4 stages cleared
Introduction
Apr 2026
Committee Review
Floor Vote
Governor
Introduced Apr 30, 2026 Last action May 12, 2026
Maddy AI version diff · 1 comparison

What changed between versions

Filed Edition 1 · 3 edits
MINOR
The bill text was reformatted from a draft version to a clean edition, removing internal tracking codes and correcting the session date. The substantive policy content regarding the council's composition, member terms, and funding remains unchanged.
TECHNICAL

Removed internal document tracking codes, draft headers, and the original filing date of April 30, 2026.

Added a clean header identifying the document as 'Edition 1' with the updated session date of May 4, 2026.

Reordered the list of council members to align with the new document structure, though the specific roles and requirements for each position remain identical.

Floor votes

How they voted

No floor votes recorded yet.
Full legislative history

Actions timeline

Total actions
5
Key actions
1
Committee
3
May 12, 2026
Committee
Re-ref Com On Appropriations
lower
May 12, 2026
Lower · Passed
Reptd Fav
lower
May 4, 2026
Committee
Ref to the Com on Health, if favorable, Appropriations, if favorable, Rules, Calendar, and Operations of the House
lower
Apr 30, 2026
Introduced
Filed
lower
3 primary · 16 co-sponsors

Sponsors