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Committee extends Rare Disease Advisory Council authorization to 2028
Summary
The House Health Committee unanimously reported House Bill 1527 to extend the authorization of the Pennsylvania Rare Disease Advisory Council through June 30, 2028, with sponsors saying the council needs more time to finish data collection and reporting on patient and provider experiences.
The House Health Committee unanimously reported House Bill 1527, which extends the authorization date for the Pennsylvania Rare Disease Advisory Council to June 30, 2028.
Representative Davidson, the bill sponsor, told the committee that the council, created in 2017, needs additional time to finalize a survey of patient and provider experiences and to prepare findings for public release. “They need a little more time to get that data…
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