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Committee reviews H.46 creating a Rare Disease Advisory Council; outlines membership and duties
Summary
The committee walked through H.46, which would create a Rare Disease Advisory Council in the Department of Health, listed proposed membership (state officials, patients, clinicians, insurers, industry and advocacy representatives) and sets reporting, meeting and outreach duties including an annual report due December 15.
The House committee on Housing and Services reviewed H.46, an act to create a Rare Disease Advisory Council within the Vermont Department of Health and to add a new chapter in Title 18 governing rare diseases. Katie, legislative counsel, described the bill’s structure, membership, duties and reporting requirements.
Katie said the bill would create the advisory council “to provide guidance and recommendations to the public, general assembly, and other government agencies and departments as necessary regarding the needs of individuals living with rare diseases in Vermont.” The draft sets out membership categories that include the commissioner of health (or designee), the commissioner of DCF or designee, the commissioner of financial regulation or designee, the director of the Office of Racial Equity, two individuals living with…
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