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Lawmakers Hear Case for Vermont Rare Disease Advisory Council
Summary
Testimony from the ALS Association urged creation of a Rare Disease Advisory Council to improve diagnosis, care coordination and emergency planning for Vermonters with rare conditions; witnesses cited gaps in transportation, dental care and public-health coordination and noted the state’s new ALS registry.
Legislative committee members heard testimony urging creation of a Rare Disease Advisory Council to give Vermonters living with conditions such as amyotrophic lateral sclerosis a formal channel to state government.
Danielle Spadafore, managing director of advocacy for the ALS Association, told the committee the council would “give a unified voice to Vermont state government” and urged the panel to move the bill swiftly. Spadafore said the ALS Association serves “about roughly 50 families in Vermont currently” and cited broader estimates that roughly 1 in 10 people live with a rare disease.
The witnesses told the committee the council would help address delays in diagnosis and difficulties accessing specialists and coordinated…
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