Bill > HB1527

This bill reenacts and amends the Rare Disease Advisory Council Act to extend the council's operation and clarify its composition and responsibilities. Specifically, the bill adds four new members to the advisory council - one individual appointed by each of the Senate Majority and Minority Leaders, and one individual appointed by each of the House Majority and Minority Leaders. The bill also extends the expiration date of the act from June 30, 2025 to July 1, 2028, effectively prolonging the council's existence. The Rare Disease Advisory Council, established within the Department of Health, is tasked with coordinating statewide efforts to study rare diseases, which are defined as conditions affecting fewer than 200,000 individuals in the United States. The council's key duties include researching rare disease data, identifying treatment priorities, developing policy recommendations, raising public awareness, and producing comprehensive reports on rare diseases in the Commonwealth. The bill ensures the council will continue to function, with members serving without compensation but eligible for expense reimbursement, and requires the council to meet at least three times per year while collaborating with various state agencies and potentially federal organizations like the National Institutes of Health and the Food and Drug Administration.

Budget and Finance, Health and Social Services

https://www.legis.state.pa.us/cfdocs/billinfo/bill_history.cfm?syear=2025&sind=0&body=H&type=B&bn=1527