Comment from United Porphyrias Association
AnonymousSupportAdvocacy
Summary: The United Porphyrias Association, a patient advocacy organization, supports the Commissioner’s National Priority Voucher (CNPV) Pilot Program but urges the FDA to improve its implementation. The organization recommends incorporating a structured patient-informed perspective into the Review Council, applying science-based flexibility for rare disease review, and evaluating the program's success based on patient-relevant outcomes and clarity rather than just review timelines.
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