H.46

An act relating to the Rare Disease Advisory Council

Sponsors: Rep. Anne Donahue, Rep. Daniel Noyes, Rep. Mary-Katherine Stone

Last Recorded Action: 5/1/2026 - Senate Message: Passed in concurrence with proposal of amendment

Committee Activity - Meeting Full List

Regular Session 2025-2026
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, Bill 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 and 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