Vermont 2025-2026 Regular Session Status: Enacted Bipartisan · 2 D · 1 I cosponsors

H 46 — An act relating to the Rare Disease Advisory Council

Last action — House message: Governor approved bill on May 18, 2026

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  1. ✓
    Introduced
  2. ✓
    In Committee
  3. ✓
    Passed House
  4. ✓
    Passed Senate
  5. ✓
    To Executive
  6. 6
    Enacted

This bill has been enacted into law. Introduced January 21, 2025. Enacted.

Signed by Governor Phil Scott (Republican) on May 18, 2026.

Prognosis

Likely to advance 72% · moderate confidence

Where this bill stands today.

Odds of enactment

High

How often bills like it became law.

  • Enacted

    Current position in the legislative process.

  • 3 sponsors

    3 primary, 0 co-sponsors signed on.

  • Bipartisan support

    Sponsored across 2 parties (2 D · 1 I) — cross-party backing.

Prognosis reads this bill's own signals — stage, sponsorship breadth, committee status, recorded votes and cross-state momentum. Odds come from a model trained on which bills have become law.

In plain language

The bill establishes a Rare Disease Advisory Council in Vermont.

This act creates the Rare Disease Advisory Council to guide and recommend actions for those affected by rare diseases. It also mandates the Department of Health to collaborate on long COVID support and report recommendations by February 1, 2027.

What this means for you
  • Families: This means families affected by rare diseases will have a dedicated council advocating for their needs.

Bill Text

What changed in the latest version

209 added · 99 removed

Plain-language change summary

The recent amendment to Bill H.46 includes the formation of a Rare Disease Advisory Council, which will consist of Vermonters appointed by two health care organizations. This council will aim to improve patient access to and quality of services for rare disease specialists. These changes are significant because they directly address the common challenges that rare disease patients face, such as delayed diagnoses and limited treatment options, ultimately aiming to enhance their overall care.

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AS PASSED BY HOUSE H.46 Page 1 of 5 H.46 An act relating to the Rare Disease Advisory Council It is hereby enacted by the General Assembly of the State of Vermont:
BILL AS PASSED BY THE HOUSE H.46 Page 1 of 10 H.46 Introduced by Representatives Donahue of Northfield, Noyes of Wolcott, and Stone of Burlington Referred to Committee on Date:
Subject:
Health;
rare diseases;
advisory council Statement of purpose of bill as introduced:
This bill proposes to establish the Rare Disease Advisory Council.
An act relating to the Rare Disease Advisory Council It is hereby enacted by the General Assembly of the State of Vermont:
18 V.S.A.
chapter 19 is added to read:
CHAPTER 19.
RARE DISEASES § 981.
RARE DISEASE ADVISORY COUNCIL (a) Creation.
There is created the Rare Disease Advisory Council within the Department of Health to provide guidance and recommendations to the public, General Assembly, and other government agencies and departments, as necessary, regarding the needs of individuals living with rare diseases in Vermont.
(b) Membership.
BILL AS PASSED BY THE HOUSE H.46 Page 2 of 10 (1) The Advisory Council shall be composed of the following members, with members potentially fulfilling multiple roles if the member meets qualifications of more than one subdivision:
(A) the Commissioner of Health or designee;
(B) the Commissioner of Vermont Health Access or designee;
(C) the Commissioner of Financial Regulation or designee;
(D) the Director of the Office of Racial Equity or designee;
(E) two individuals living with a rare disease, one appointed by the Speaker of the House and one appointed by the Senate Committee on Committees;
(F) a representative of an academic research institution in the State that receives grant funding for rare disease research, appointed by the Speaker of the House;
(G) a caregiver of a person living with a rare disease, appointed by the Senate Committee on Committees;
(H) a physician practicing in Vermont with experience treating a rare disease, appointed by the Vermont Medical Society;
(I) a nurse practicing in Vermont with experience treating a rare disease, appointed by the Vermont chapter of the American Nurses Association;
BILL AS PASSED BY THE HOUSE H.46 Page 3 of 10 (J) a geneticist or genetic counselor, appointed by the Senate Committee on Committees;
(K) a representative of health insurance companies serving Vermonters, appointed jointly by Blue Cross Blue Shield of Vermont and MVP Health Care;
(L) a representative of the biopharma industry doing business in Vermont, appointed by the Speaker of the House;
and (M) a representative of a rare disease patient organization operating in Vermont, appointed by the Governor.
(2) In event there is an even number of members on the Advisory Council after the appointments are made pursuant to subdivision (1) of this section, the Governor shall appoint one additional member, provided the member aligns with the Advisory Council’s purpose and prioritizes representation of patients and caregivers.
(c) Powers and duties.
The Advisory Council shall conduct the following activities for the benefit of individuals impacted by rare diseases in Vermont:
(1) convene public hearings, make inquiries, and solicit comments from the general public to assist the Advisory Council with an initial needs assessment of individuals with a rare disease in Vermont and the needs of their caregivers and providers;
BILL AS PASSED BY THE HOUSE H.46 Page 4 of 10 (2) provide testimony and comments on pending legislation and rules that impact Vermont’s rare disease community before the General Assembly and other State agencies;
(3) consult with experts on rare diseases to develop policy recommendations that:
(A) improve patient access to and quality of services provided by rare disease specialists;
(B) advance affordable and comprehensive health care coverage;
(C) provide relevant diagnostic services and improve programs such as the State’s newborn screening program;
and (D) ensure timely treatment and other needed services;
(4) publish a list of existing, publicly accessible resources on research, diagnosis, and treatment, including education resources for health care providers, relating to rare diseases on the Advisory Council’s website;
(5) review the Department of Health’s January 2025 presentation describing the public health impact of rare diseases in Vermont and the Department’s role in addressing rare diseases statewide as required by 2024 Acts and Resolved No.
Show all 77 changed rows (37 more)
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164, Sec.
2;
and (6) any other priorities identified by the Department of Health or a majority of the Advisory Council.
BILL AS PASSED BY THE HOUSE H.46 Page 5 of 10 (d) Assistance.
The Advisory Council shall have the administrative, technical, and legal assistance of the Department of Health.
(e) Report.
Annually, on or before December 15, the Advisory Council shall submit a written report to the House Committees on Health Care and on Human Services and to the Senate Committee on Health and Welfare with its findings and any recommendations for legislative action, including:
(1) a description of the activities and progress of the Advisory Council during the previous year;
and (2) an update on the status of the Advisory Council’s funding needs.
(f) Meetings.
(1) The Commissioner of Health or designee shall call the first meeting of the Advisory Council.
(2) The Commissioner of Health or designee shall serve as the chair.
(3) During the first year of enactment, the Advisory Council shall meet on at least a monthly basis and thereafter by the call of the Chair.
Meetings may be held in person or remotely on an electronic platform as determined by the Chair.
(4) A majority of the membership shall constitute a quorum.
(5) The Advisory Council shall maintain a web page on the Department of Health’s website containing notices of upcoming meetings, meeting minutes, public comments, and previous annual reports.
BILL AS PASSED BY THE HOUSE H.46 Page 6 of 10 (g) Compensation and reimbursement.
The members of the Advisory Council not otherwise compensated for their participation shall be entitled to per diem compensation and reimbursement of expenses as permitted under 32 V.S.A.
§ 1010 for not more than 12 meetings annually.
These payments shall be made from monies appropriated to the Department of Health.
Sec.
2.
EFFECTIVE DATE This act shall take effect on July 1, 2025.
Sec.
1.
RARE DISEASES § 981.
RARE DISEASES § 981.
RARE DISEASE ADVISORY COUNCIL (a) Creation.
RARE DISEASE ADVISORY COUNCIL BILL AS PASSED BY THE HOUSE H.46 Page 7 of 10 (a) Creation.
There is created the Rare Disease Advisory Council within the Department of Health to provide guidance and recommendations to the public, General Assembly, and other government agencies and departments, as VT LEG #383600 v.1 AS PASSED BY HOUSE H.46 Page 2 of 5 necessary, regarding the needs of individuals living with rare diseases in Vermont.
There is created the Rare Disease Advisory Council within the Department of Health to provide guidance and recommendations to the public, General Assembly, and other government agencies and departments, as necessary, regarding the needs of individuals living with rare diseases in Vermont.
(H) a nurse practicing in Vermont with experience treating a rare disease, appointed by the Vermont chapter of the American Nurses Association;
BILL AS PASSED BY THE HOUSE H.46 Page 8 of 10 (H) a nurse practicing in Vermont with experience treating a rare disease, appointed by the Vermont chapter of the American Nurses Association;
VT LEG #383600 v.1 AS PASSED BY HOUSE H.46 Page 3 of 5 (I) a pharmacist practicing in Vermont, appointed by the Senate Committee on Committees;
(I) a pharmacist practicing in Vermont, appointed by the Senate Committee on Committees;
(A) identify conditions to recommend to the Newborn Screening Advisory Committee as part of the Vermont Newborn Screening Program;
BILL AS PASSED BY THE HOUSE H.46 Page 9 of 10 (A) identify conditions to recommend to the Newborn Screening Advisory Committee as part of the Vermont Newborn Screening Program;
and VT LEG #383600 v.1 AS PASSED BY HOUSE H.46 Page 4 of 5 (B) support timely patient access to diagnostic services and treatment and enhance quality of services provided by rare disease specialists;
and (B) support timely patient access to diagnostic services and treatment and enhance quality of services provided by rare disease specialists;
(3) The Advisory Council shall meet quarterly.
BILL AS PASSED BY THE HOUSE H.46 Page 10 of 10 (3) The Advisory Council shall meet quarterly.
VT LEG #383600 v.1 AS PASSED BY HOUSE H.46 Page 5 of 5 (g) Compensation and reimbursement.
(g) Compensation and reimbursement.
The members of the Advisory Council not otherwise compensated for their participation shall be entitled to per diem compensation and reimbursement of expenses as permitted under 32 V.S.A.
The members of the Advisory Council not otherwise compensated for their participation shall be entitled to per diem compensation and reimbursement of expenses as permitted under 32 V.S.A.
§ 1010 for not more than four meetings annually.
§ 1010 for not more than four meetings annually.
VT LEG #383600 v.1
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Amendments

2 amendments

Click Show changes on an amendment above to see how it modifies the bill.

Action History

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

  2. Signed by Governor on May 18, 2026

  3. Delivered to the Governor on May 12, 2026

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

  5. Senate proposal of amendment concurred in

  6. Action Calendar: Senate Proposal of Amendment

  7. Notice Calendar: Senate Proposal of Amendment

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

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

  10. New Business/Third Reading

  11. 3rd reading ordered

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

  13. Reported favorably by Senator Lyons for Committee on Appropriations

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

  15. Favorable report by Committee on Appropriations

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

  17. Unfinished Business/Second Reading

  18. Favorable report by Committee on Appropriations

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

  20. Second Reading

  21. Favorable report by Committee on Appropriations

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

  23. Second Reading

  24. Entered on Notice Calendar

  25. Referred to Committee on Appropriations per Senate Rule 31

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

  27. Second Reading

  28. Entered on Notice Calendar

  29. Referred to Committee on Health and Welfare per Temporary Senate Rule 44A

  30. Read 1st time & referred to Committee on Rules

  31. Read third time and passed

  32. Action Calendar: Third Reading

  33. Third Reading ordered

  34. Report of Committee on Human Services agreed to

  35. Rep. Bluemle of Burlington recommended for the Committee on Appropriations

  36. Rep. Garofano of Essex reported for the Committee on Human Services

  37. Read second time

  38. Action Calendar: Unfinished Business

  39. Action Calendar: Favorable with Amendment

  40. Notice Calendar: Favorable with Amendment

  41. Referred to Committee on Appropriations per Rule 35(a)

  42. Notice Calendar: Favorable with Amendment

  43. Read first time and referred to the Committee on Human Services

Sponsors

Sponsorship breakdown

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3 sponsors · 0 co-sponsors · 187 not signed on

Sponsors (3)

Co-sponsors (0)

None.

Not signed on (187)

187 members have not signed on to this bill.

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"Not signed on" means a member has not sponsored or co-sponsored this bill — it does not imply opposition. Members flagged Voted No have a recorded No vote on this bill.

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Subjects

healthcare health-insurance
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Frequently asked questions

Who sponsors H 46?
H 46 is sponsored by Mary-Katherine A Stone (Democrat), Daniel A Noyes (Democrat), and Anne B. B Donahue (Independent).
What is the current status of H 46?
This bill has been enacted into law. Introduced January 21, 2025. Enacted.
Where can I track H 46?
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