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 - Witnesses Who Testified
Regular Session 2025-2026
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, Bill 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 and 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
- 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