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
Role
Legislator
Party
State
District
P
Becky Carney
DDemocratic
P
Donny Lambeth
RRepublican
P
Mary Belk
DDemocratic
Co
Amanda Cook
DDemocratic
Co
Bryan Cohn
DDemocratic
Co
Carla Cunningham
IIndependent
Co
Carolyn Logan
DDemocratic
Co
Cynthia Ball
DDemocratic
Co
Deb Butler
DDemocratic
Co
Garland Pierce
DDemocratic
Co
Gloristine Brown
DDemocratic
Co
Julia Greenfield
DDemocratic
Co
Kanika Brown
DDemocratic
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