Committee extends Rare Disease Advisory Council authorization to 2028

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 together, to present it and give it to the public,” Davidson said.

Committee discussion noted the definition of a rare disease in U.S. law — one affecting fewer than 200,000 individuals per disease — and emphasized the collective impact of many rare diseases. Chair Rapp said the council coordinates statewide efforts to study incidence and prevalence and said she would support the extension. Committee members described the council’s work as important for improving patient and provider experiences and asked members for an affirmative vote.

Representative Davidson characterized the council’s work as stemming from constituent-driven needs and described the personal advocacy of people affected by rare diseases. Committee statements in the record referenced numbers cited by sponsors: an estimate that roughly 30,000,000 Americans live with rare diseases and that there are more than 7,000 known rare diseases; Davidson also said “1 in 12 Pennsylvanians have a rare disease.”

There were no recorded negative votes; the committee reported the bill unanimously. The extension would keep the advisory council active through June 30, 2028; the committee did not discuss new funding in the record.

Next steps: Because the committee reported the bill, it will proceed to the next stage of the legislative process for further consideration.