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Patients, advocates urge committee to establish Rare Disease Advisory Council (H46)
Summary
Dozens of patients, caregivers and advocacy groups testified in favor of H46, a bill to create a Rare Disease Advisory Council in Vermont, citing long diagnostic delays, gaps in coordinated care, and the need for a formal advisory body to connect patients, providers and policymakers.
Dozens of patients, caregivers and advocacy‑group representatives testified before the House Committee on Human Services in support of H46, a bill to establish a Rare Disease Advisory Council in Vermont.
Sarah (last name not specified), speaking as a patient from Glover who described a variation of skeletal dysplasia, told the committee: “I am here as a patient, with a rare disorder.” She urged lawmakers to create a body that would bring lived experience into state health policy and improve access to expertise for patients with conditions that are often unfamiliar to local providers.
Katie Pockett of Essex — who identified herself as both a patient and an advocate — described living with…
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