Rare disease advisory council seeks bump to base funding

An individual rare disease affects fewer than 200,000 people, by definition.

Collectively, however, an estimated 10,000 rare diseases impact millions of Americans and an estimated one in 10 Minnesotans. People with rare diseases face real barriers to care, including delays in diagnosis, primary care providers with no experience with the disease and few-to-no options for treatment.

Helping patients, providers and policymakers navigate those barriers is the job of the Minnesota Rare Disease Advisory Council. Its mission is to "provide advice on research, diagnosis, treatment, and education related to rare diseases."

A bill that would appropriate $342,000 in fiscal years 2026 and 2027 from the General Fund for the council was laid over Wednesday by the House Health Finance and Policy Committee.

Rep. Tom Murphy (R-Underwood), who sponsors HF1501, said Minnesota has become a world leader in addressing challenges of rare diseases with participation by the University of Minnesota and the Mayo Clinic.

The council’s executive director, Erica Barnes, said the rare disease community has become ground zero for cutting-edge technology and medical innovation, but delivery is hampered by upfront costs and an ill-fitting reimbursement system.

“In order to take this transformative therapy from the lab to the clinic, we will have to identify policies to reshape the health care delivery landscape,” Barnes said.

Most states have a rare disease advisory council, but Minnesota is the only one that is a state agency. Its projects include an online continuing education series, patient advocacy listening sessions, and position papers on proposed legislation.

Barnes said the request would double the current base funding, but would be consistent with other small state agencies, which typically have four full-time-equivalent employees. Current base funding would pay for fewer than two.