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PA HB1527
Bill
Status
6/25/2025
Primary Sponsor
Nathan Davidson
Click for details
AI Summary
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Extends the Rare Disease Advisory Council Act expiration date from June 30, 2025 to July 1, 2028, with retroactive application to June 30, 2025
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Adds four new legislative appointees to the council: one each from the Senate Majority Leader, Senate Minority Leader, House Majority Leader, and House Minority Leader
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Council membership includes the Secretary of Health, Insurance Commissioner, heads of relevant state agencies, and public members such as physicians, nurses, hospital representatives, health insurers, biopharmaceutical industry representatives, researchers, parents of children with rare diseases, and affected individuals
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Council is tasked with studying rare disease incidence and prevalence in Pennsylvania, coordinating with federal agencies like NIH and FDA, developing policy recommendations, and delivering preliminary and comprehensive reports to legislative health committees
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"Rare disease" is defined as a condition affecting fewer than 200,000 individuals in the United States; public members serve without compensation but may be reimbursed for travel expenses
Legislative Description
Reenacting and amending the act of July 7, 2017 (P.L.285, No.14), entitled "An act establishing the Rare Disease Advisory Council and providing for its powers and duties; and providing for duties of the Department of Health, the Insurance Department, the Department of Human Services and the Department of Education."
Last Action
Re-referred to Appropriations
7/17/2025