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 and bring together members of the government and the public to comment on legislation.
For more information, contact Executive Director Erica Barnes at [email protected].
The Council has currently identified the following priorities for the 2023 legislative session:
Policy priority #1
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. Contact your state legislators today to let them know that you support ongoing funding for the MN Rare Disease Advisory Council.
Policy priority #2
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. Contact your state legislators today to let them know that you support the right of an individual with a rare disease to see a specialist with expertise in treating their specific disease.