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MN SF1069

MN SF1069
Membership of the Rare Disease Advisory Council modification


summary

Introduced
02/06/2025
In Committee
02/06/2025
Crossed Over
Passed
Dead

Introduced Session

94th Legislature 2025-2026

Bill Summary

A bill for an act relating to health; modifying membership of the Rare Disease Advisory Council; appropriating money; amending Minnesota Statutes 2024, section 256.4835, subdivisions 2, 4, by adding subdivisions.

AI Summary

This bill modifies the composition and operation of the Minnesota Rare Disease Advisory Council by expanding and clarifying its membership structure. The bill restructures the council to consist of at least 17 public members appointed by the governor, representing diverse expertise including physicians, nurses, hospital administrators, patients, caregivers, medical professionals, and industry representatives. It adds two new membership categories: legislative members (two senators and two representatives) and ex officio, non-voting members from Mayo Medical School and the University of Minnesota Medical School. The bill also introduces an optional ad hoc membership category, allowing up to a certain number of additional members to provide specialized expertise for specific projects. Public members will serve three-year terms and can be reappointed twice, while serving without compensation but with potential expense reimbursement. The council's existing duties remain largely unchanged, focusing on developing resources, identifying best practices, addressing patient care challenges, and advising state agencies on rare disease issues. Additionally, the bill includes an appropriation to fund the council's study of sustainable reimbursement models for gene therapies treating rare diseases, with funding allocated for fiscal years 2026-2030.

Committee Categories

Health and Social Services

Sponsors (1)

Last Action

Referred to Health and Human Services (on 02/06/2025)

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