The bill amends Minnesota Statutes 2022, section 256.4835, to modify the membership structure of the Rare Disease Advisory Council. It establishes that the council will consist of at least 17 public members appointed by the governor, with specific qualifications outlined for various roles, including healthcare professionals and representatives from patient organizations. Notably, the previous requirement for legislative members has been removed, and new provisions have been added to include legislative members and ex officio members, ensuring a broader representation of expertise. Additionally, the council can appoint ad hoc members for specific projects, who will serve without compensation but may have their expenses reimbursed.

Furthermore, the bill includes an appropriation of funds from the general fund to support the council's activities, specifically to study sustainable reimbursement models for gene therapies related to rare diseases. The funding is allocated for fiscal years 2025 through 2028, with the aim of providing recommendations to the legislature and relevant stakeholders. The council's duties are also expanded to include advising on policy issues and advancing initiatives at both state and federal levels, as well as collecting public input for future studies.

Statutes affected:
Introduction: 256.4835