Get Full Government Meeting Transcripts, Videos, & Alerts Forever!
Get email alerts on the Rare Disease Council topic
No spam. Unsubscribe anytime.
UVM Larner dean backs rare-disease council in principle but prefers Department of Health lead
Summary
Dr. Paige, dean of the Larner College of Medicine at UVM, told the House Human Services Committee she supports a rare-disease advisory council in Vermont but said the Department of Health is the most natural host; she offered UVM as an enthusiastic partner and said the college could accept a statutory designation if lawmakers requested it.
The House Human Services Committee took testimony on H.46, a bill to establish a Rare Disease Advisory Council, and heard from Dr. Paige, dean of the Larner College of Medicine at the University of Vermont.
Dr. Paige said she supports the concept and applauded efforts to create a council that could coordinate services, research and advocacy for people with rare diseases. She told the committee she is not a rare-disease specialist but that "we have experts in many of the different rare diseases" at UVM and that the college would be "enthusiastic" to participate.
"I would volunteer to be written into statute," Dr. Paige said, while adding that the Department of Health is also an appropriate home for a council because the issue is a public-health concern. She said UVM would be eager to support the council and could provide a designee if the Legislature wanted the Larner College represented in statute.
Committee context and next steps
Chair Theresa Wood said the committee had narrowed the scope of the draft bill and reduced the number of meetings to lower costs. Committee members noted that several other New England states place rare-disease councils within public-health agencies and that a council could pull together stakeholders from the Department of Disabilities, Aging and Independent Living and other agencies.
Dr. Paige said UVM would be a willing partner if the Department of Health declines to host the council, but she reiterated her preference that the initiative remain anchored in public health. The committee asked the Department of Health to confirm whether it can host the council; the bill's sponsors gave the Department an extra week to respond and said they would work with the Department and with UVM on next steps.
Ending: legislators said they remain interested in establishing a council and will await the Department of Health's response before moving the bill further.
