Minnesota’s Rare Disease Advisory Council was created and funded by the legislature in 2019. The operationalization of the council is not happening in the way that was discussed by stakeholders advocating for the legislation.
The University of Minnesota facilitates the Rare Disease Advisory Council. The council brings together medical experts and people affected by rare diseases to call for more research and provide a support network to the thousands of Minnesotans who live with rare diseases.
However, the University of Minnesota discourages the RDAC from taking policy positions (included the policy regarding out-of-network coverage for diagnosis and treatment of rare diseases). This inhibits the council from effectively advocating for people with rare diseases and is not in line with other advisory councils’ policy supporting norms. MCD supports amending RDAC legislation to allow them to consult with the legislature and take policy positions. This would allow the council to take policy positions and utilize the state interagency network (including MCD) to further its policy goals.
The state has granted the Rare Disease Advisory Committee funding for the next four years, so there would be no need for new or additional funding from the state.
Many disabilities are manifestations of rare diseases, and having a functional state agency to represent and support policies on their behalf would improve their medical care and access to services.
- Minnesota Consortium for Citizens with Disabilities
- Gillette Children’s Specialty Healthcare
- Rare Disease Advisory Council
Because the Rare Disease Advisory Council is currently being facilitated through the University of Minnesota and the board chair is the dean of the medical school, the U of M may resist having the RDAC take policy positions.
Goal of Policy
Rare diseases cause a wide range of disabilities, so the goal of this amendment would be to have better representation for rare diseases in the state of Minnesota.