H.46

An act relating to the Rare Disease Advisory Council

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

Location: Senate Rules Committee

Last Recorded Action: 5/16/2025 - Read 1st time & referred to Committee on Rules

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