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Oregon committee hears bill to create Rare Disease Advisory Council
Summary
Lawmakers heard testimony on House Bill 2457 to establish a state Rare Disease Advisory Council after advocates and researchers described long diagnostic delays, travel burdens for specialty care and gaps in insurance coverage.
The House Behavioral Health and Healthcare Committee heard testimony Jan. 30 on House Bill 2457, which would create a Rare Disease Advisory Council (RDAC) to advise state policymakers and health agencies on rare-disease care and policy.
Advocates said a council would give patients and families a unified voice in state government and help reduce costs by guiding more targeted policy responses. "I'm pleased to be here today in support of HB 2,457, which would establish a rare disease advisory council or RDAC in the state of Oregon," said Lindsay Viscara, state policy manager for the National Organization for Rare Disorders, adding that she is also a parent of children with rare diseases.
The proposal would form a stakeholder advisory body to gather data, recommend outreach and resource strategies, and coordinate with state agencies. "A rare disease advisory council is a state level advisory body, made up of stakeholders in the rare disease community," Viscara said.
Researchers and patients described the…
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