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VermontH.462025-2026 SessionHouseWALLET

An act relating to the Rare Disease Advisory Council

Sponsored By: Anne B. B Donahue (Independent)

Signed by Governor

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Bill Overview

Analyzed Economic Effects

1 provisions identified: 1 benefits, 0 costs, 0 mixed.

New council for Vermonters with rare diseases

Beginning July 1, 2026, the law creates a Rare Disease Advisory Council within Vermont's Department of Health. It advises the public, lawmakers, and state agencies about the needs of people with rare diseases. It gathers public input, identifies service gaps, and recommends better screening, diagnosis, treatment, and specialist care. It also comments on proposed laws and agency rules. The council meets every three months and includes patients, caregivers, health professionals, and state representatives. At least one of its two members living with a rare disease must be an older Vermonter. Members serve staggered five-year terms and can serve again. The Department supports the council and posts meeting notices, minutes, public comments, and reports online. Members not otherwise paid for participating are entitled to daily meeting pay and expense reimbursement for up to four meetings yearly. Payment amounts follow existing state law; this act does not specify them. The council does not itself change health coverage or household benefits.

Sponsors & Cosponsors

Sponsor

  • Anne B. B Donahue

    Independent • House

Cosponsors

  • Daniel A Noyes

    Democratic • House

  • Mary-Katherine A Stone

    Democratic • House

Roll Call Votes

No roll call votes available for this bill.

Actions Timeline

  1. House message: Governor approved bill on May 18, 2026

    5/19/2026House

  2. Signed by Governor on May 18, 2026

    5/18/2026House

  3. Delivered to Governor on May 12, 2026

    5/12/2026House

  4. House message: House concurred in Senate proposal of amendment

    5/8/2026House

  5. Senate proposal of amendment concurred in

    5/6/2026House

  6. Action Calendar: Senate Proposal of Amendment

    5/6/2026House

  7. Notice Calendar: Senate Proposal of Amendment

    5/5/2026House

  8. Senate Message: Passed in concurrence with proposal of amendment

    5/1/2026Senate

  9. Read 3rd time & passed in concurrence with proposal of amendment

    4/30/2026Senate

  10. New Business/Third Reading

    4/30/2026Senate

  11. 3rd reading ordered

    4/29/2026Senate

  12. Proposal of amendment by Committee on Health and Welfare agreed to

    4/29/2026Senate

  13. Reported favorably by Senator Lyons for Committee on Appropriations

    4/29/2026Senate

  14. Read 2nd time, reported favorably with proposal of amendment by Senator Morley for Committee on Health and Welfare

    4/29/2026Senate

  15. Favorable report by Committee on Appropriations

    4/29/2026Senate

  16. Favorable report with proposal of amendment by Committee on Health and Welfare

    4/29/2026Senate

  17. Unfinished Business/Second Reading

    4/29/2026Senate

  18. Favorable report by Committee on Appropriations

    4/28/2026Senate

  19. Favorable report with proposal of amendment by Committee on Health and Welfare

    4/28/2026Senate

  20. Second Reading

    4/28/2026Senate

  21. Favorable report by Committee on Appropriations

    4/24/2026Senate

  22. Favorable report with proposal of amendment by Committee on Health and Welfare

    4/24/2026Senate

  23. Second Reading

    4/24/2026Senate

  24. Entered on Notice Calendar

    4/24/2026Senate

  25. Referred to Committee on Appropriations per Senate Rule 31

    4/22/2026Senate

Bill Text

  • As Enacted (ACT 98)Opens in a new window

    5/27/2026

    PDF

  • As Passed by Both Chambers

    5/12/2026

    PDF

  • As Passed by Both Chambers (Unofficial)

    5/12/2026

    PDF

  • Senate Proposal of Amendment

    5/4/2026

    PDF

  • Senate Proposal of Amendment (Unofficial)

    5/4/2026

    PDF

  • As Passed by the House

    5/15/2025

    PDF

  • As Passed by the House (Unofficial)

    5/15/2025

    PDF

  • As Introduced

    1/17/2025

    PDF

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