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Rare-disease advocates urge advisory council; sponsor pulls bill for further study
Summary
Representatives heard testimony from the National Organization for Rare Disorders and supporters about creating a Rare Disease Advisory Council (RDAC). Questions about funding and scope led the sponsor to withdraw the bill for further work and possible interim study.
Lindsey Viscara, state policy manager for the National Organization for Rare Disorders (NORD), told the committee that House Bill 1532 would create a Rare Disease Advisory Council to give patients and families a state-level voice on diagnosis, treatment access and drug affordability.
"A rare disease is defined federally as any disease that affects fewer than 200,000 people," Viscara said, adding that rare…
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