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Policy

The Minnesota Rare Disease Advisory Council (MNRDAC) supports and promotes public policy goals that positively impact the rare disease community. We help policymakers understand how their decisions affect the rare disease community. Read our 2024 Policy Guide.

The MNRDAC is committed to incorporating input from our community, here’s our most recent Insight Report compiled from our June 2023 listening session.

For more information, contact Executive Director Erica Barnes at [email protected].

Priorities from the past legislative session:

Policy priority #1

PASSED – with partial requested amount

The Council was originally funded for 4 years, ending in FY2023. (HF988/SF705) would appropriate funds to both continue the ongoing activities of the Council as well as expand its staffing and outreach capacity.

Policy priority #2

PASSED – will go into effect January 1, 2024

Many individuals with rare diseases have a limited number of specialists with knowledge about their specific rare disease. Often when an individual seeks care from a knowledgeable specialist, they face the dilemma of going “out of network” for insurance. HF384/SF1029 ensures that an individual with a rare disease (or suspected rare disease under certain criteria) may see a provider with expertise in their rare disease regardless of network status.

Often when an individual seeks care from a knowledgeable specialist, they face the dilemma of going “out of network” for insurance. See our Bringing Care to Rare infographic.

Minnesota Government Resource: Who Represents Me?

You can make a difference by making your voice heard by your Senators and Representative.

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