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H.46 (Act 98)

An act relating to the Rare Disease Advisory Council

Rep. Anne Donahue , Rep. Daniel Noyes , Rep. Mary-Katherine Stone ,
5/19/2026 - House message: Governor approved bill on May 18, 2026
Sponsor(s)
Last Recorded Action
Senate 5/19/2026 - House message: Governor approved bill on May 18, 2026Opens in a new window
Bill/Resolution Text

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An act relating to the Rare Disease Advisory Council

Detailed Status

Regular Session 2025-2026
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An act relating to the Rare Disease Advisory Council

Roll Call History

Regular Session 2025-2026
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Although procedurally bills and resolutions are assigned to only one committee at a time, other committees may review the bill or resolution. This page contains results from both the assigned committee as well as other committees.

An act relating to the Rare Disease Advisory Council

Committee Meetings

Regular Session 2025-2026
Meeting Date Committee Actions

An act relating to the Rare Disease Advisory Council

Meeting Full List

Regular Session 2025-2026
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Thursday, March 27, 2025
Committee(s):
House Committee on Human Services,
9:00 AM

H.46 - An act relating to the Rare Disease Advisory Council

Bill introduction

Rep. Anne B. Donahue, Sponsor
Tuesday, April 15, 2025
Committee(s):
House Committee on Human Services,
2:10 PM

H.46 - An act relating to the Rare Disease Advisory Council

Walk-through

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Wednesday, April 16, 2025
Committee(s):
House Committee on Human Services,
9:00 AM

H.46 - An act relating to the Rare Disease Advisory Council

Kelly Dougherty, Deputy Commissioner, Department of Health
Carolyn Sheridan, National Organization for Rare Disorders
9:45 AM

H.46 - An act relating to the Rare Disease Advisory Council

Leslie Kanat, National Organization of Rare Diseases, National Fragile X Foundation
10:00 AM

H.46 - An act relating to the Rare Disease Advisory Council

Katie Paquette, Person with Lived Experience
Sarah Elliott, Person with Lived Experience
Suzette James, Parent Advocate
10:45 AM

H.46 - An act relating to the Rare Disease Advisory Council

Danielle Spadafora, Managing Director, Advocacy - Northeast, The ALS Association
Karin Hammer-Williamson, Care Services Coordinator- Vermont, The ALS Association
Thursday, April 17, 2025
Committee(s):
House Committee on Human Services,
9:30 AM

H.46 - An act relating to the Rare Disease Advisory Council

Committee discussion and mark-up

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
10:00 AM

H.46 - An act relating to the Rare Disease Advisory Council

Ashley Michaud, Caregiver and Family Member
10:30 AM

H.46 - An act relating to the Rare Disease Advisory Council

Committee discussion and mark-up

Tuesday, April 22, 2025
Committee(s):
House Committee on Human Services,
2:15 PM

H.46 - An act relating to the Rare Disease Advisory Council

Richard Page, Dean, Larner College of Medicine at the University of Vermont
2:35 PM

H.46 - An act relating to the Rare Disease Advisory Council

Committee discussion

Natalie Weill, Public Health Policy Advisor
Tuesday, April 29, 2025
Committee(s):
House Committee on Human Services,
2:00 PM

H.46 - An act relating to the Rare Disease Advisory Council

Kelly Dougherty, Deputy Commissioner, Department of Health
Natalie Weill, Public Health Policy Advisor, Department of Health
Wednesday, April 30, 2025
Committee(s):
House Committee on Human Services,
9:00 AM

H.46 - An act relating to the Rare Disease Advisory Council

Committee discussion and mark-up

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Friday, May 2, 2025
Committee(s):
House Committee on Human Services,
11:30 AM

H.46 - An act relating to the Rare Disease Advisory Council

Vote

Nolan Langweil, Principal Fiscal Analyst, Joint Fiscal Office
Thursday, May 8, 2025
Committee(s):
House Committee on Appropriations,
10:15 AM

H.46 - An act relating to the Rare Disease Advisory Council

Walk through and possible vote

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Nolan Langweil, Principal Fiscal Analyst, Joint Fiscal Office
Wednesday, March 25, 2026
Committee(s):
Senate Committee on Health and Welfare,
9:45 AM

H.46 - An act relating to the Rare Disease Advisory Council

Introduction and Walk-Through

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Rep. Golrang "Rey" Garofano, Sponsor
Tuesday, March 31, 2026
Committee(s):
Senate Committee on Health and Welfare,
11:30 AM

H.46 - An act relating to the Rare Disease Advisory Council

Sarah Elliott, Person with Lived Experience, District Orleans-4
Ilisa Stalberg, Family and Child Health Director, Department of Health
Sydney Williamson-White, Department of Health
Jessa Barnard, Executive Director, Vermont Medical Society
Wednesday, April 8, 2026
Committee(s):
Senate Committee on Health and Welfare,
9:00 AM

H.46 - An act relating to the Rare Disease Advisory Council

Mark-Up

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Carolyn Sheridan, National Organization for Rare Disorders
Sharon Radtke, Person with Lived Experience
Ilisa Stalberg, Family and Child Health Director, Department of Health
Sydney Williamson-White, Department of Health
Jessica Schifano, Policy Director, Department of Health
Tuesday, April 14, 2026
Committee(s):
Senate Committee on Health and Welfare,
11:20 AM

H.46 - An act relating to the Rare Disease Advisory Council

Mark-Up

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Ilisa Stalberg, Family and Child Health Director, Department of Health
Jessica Schifano, Policy Director, Department of Health
Tuesday, April 21, 2026
Committee(s):
Senate Committee on Health and Welfare,
10:00 AM

H.46 - An act relating to the Rare Disease Advisory Council

Mark-Up and Vote

Danielle Jankowski, Pediatric Cancer Advocate
Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Jessica Schifano, Policy Director, Department of Health
Thursday, April 23, 2026
Committee(s):
Senate Committee on Appropriations,
1:35 PM

H.46 - An act relating to the Rare Disease Advisory Council

Walk-through and Vote

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Nolan Langweil, Principal Fiscal Analyst, Joint Fiscal Office
Tuesday, May 5, 2026
Committee(s):
House Committee on Human Services,
3:45 PM

H.46 - An act relating to the Rare Disease Advisory Council

Review Senate proposal of amendment

Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Wednesday, May 6, 2026
Committee(s):
House Committee on Human Services,
10:30 AM

H.46 - An act relating to the Rare Disease Advisory Council

Discuss Senate proposal of amendment

Jessica Schifano, Policy Director, Department of Health

An act relating to the Rare Disease Advisory Council

Witnesses Who Testified

Regular Session 2025-2026
Print Report Opens in a new window
House Committee on Appropriations
  • Nolan Langweil, Principal Fiscal Analyst, Joint Fiscal Office
  • Katie McLinn, Legislative Counsel, Office of Legislative Counsel
House Committee on Human Services
  • Rep. Anne B. Donahue, Sponsor
  • Kelly Dougherty, Deputy Commissioner, Department of Health
  • Sarah Elliott, Person with Lived Experience
  • Karin Hammer-Williamson, Care Services Coordinator- Vermont, The ALS Association
  • Suzette James, Parent Advocate
  • Leslie Kanat, National Organization of Rare Diseases, National Fragile X Foundation
  • Nolan Langweil, Principal Fiscal Analyst, Joint Fiscal Office
  • Katie McLinn, Legislative Counsel, Office of Legislative Counsel
  • Ashley Michaud, Caregiver and Family Member
  • Richard Page, Dean, Larner College of Medicine at the University of Vermont
  • Katie Paquette, Person with Lived Experience
  • Jessica Schifano, Policy Director, Department of Health
  • Carolyn Sheridan, National Organization for Rare Disorders
  • Danielle Spadafora, Managing Director, Advocacy - Northeast, The ALS Association
  • Natalie Weill, Public Health Policy Advisor
  • Natalie Weill, Public Health Policy Advisor, Department of Health
Senate Committee on Appropriations
  • Nolan Langweil, Principal Fiscal Analyst, Joint Fiscal Office
  • Katie McLinn, Legislative Counsel, Office of Legislative Counsel
Senate Committee on Health and Welfare
  • Jessa Barnard, Executive Director, Vermont Medical Society
  • Sarah Elliott, Person with Lived Experience, District Orleans-4
  • Rep. Golrang "Rey" Garofano, Sponsor
  • Danielle Jankowski, Pediatric Cancer Advocate
  • Katie McLinn, Legislative Counsel, Office of Legislative Counsel
  • Sharon Radtke, Person with Lived Experience
  • Jessica Schifano, Policy Director, Department of Health
  • Carolyn Sheridan, National Organization for Rare Disorders
  • Ilisa Stalberg, Family and Child Health Director, Department of Health
  • Sydney Williamson-White, Department of Health

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Fiscal notes and materials available on this web page are provided for informational purposes only, and may not comprise all materials received by the Vermont Legislature or the final fiscal information related to a specific bill.  The Legislature is not responsible for the accuracy of any information in these materials, and their posting does not constitute approval or endorsement by the Legislature.

Fiscal Information

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Fiscal Notes and Related Documents

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No committee of conference members found for H.46 in the Regular Session 2025-2026.

An act relating to the Rare Disease Advisory Council

Committee of Conference Meetings

Regular Session 2025-2026
Meeting Date Committee Time Actions

An act relating to the Rare Disease Advisory Council

Committee of Conference Meeting Full List

Regular Session 2025-2026
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No committee of conference meeting history found for H.46 in the Regular Session 2025-2026.
No committee of conference report found for H.46 in the Regular Session 2025-2026.

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Act


An act relating to the Rare Disease Advisory Council

Statutes Affected

Regular Session 2025-2026

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Staff & Other Information

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Katie McLinn, Legislative Counsel

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