Minnesota lawmaker proposes Rare Disease Advisory Council

A Minnesota legislator wants to create a new advisory council at the University of Minnesota to focus on treatment and research related to rare diseases.

Sen. Jeremy Miller, R-Winona, said the move will help "families reach faster diagnoses, advance groundbreaking research and ultimately find cures for these life-altering diseases." An estimated 30 million Americans live with such conditions.

"Rare diseases don't seem so rare when one in 10 Minnesotans have one," he said. "This is a grass-roots effort driven by everyday people; they've channeled their adversity into energy to make a positive difference for others."

Roughly half of all patients with rare diseases, defined as affecting fewer than 200,000 Americans, are children. But diagnoses and treatments are few and far between as funding gaps slow potential advancements in research and testing, advocates say. The new council would seek to address some of those issues, making recommendations to increase access to treatment and bring new medical technology and research to the state. Supporters say it would also create a much-needed community and voice for families affected by such diseases.

"Nobody I knew could even pronounce the disease, let alone knew anyone else with it," said Erica Barnes of Hopkins, whose daughter Chloe died of metachromatic leukodystrophy at age 2. "But as I have advocated for rare diseases over the last several years I have heard the same barriers to care as my daughter's replicated time and time again across patient populations. There is power in addressing our needs as a group."

The effort would cost the state about $150,000 a year. Miller said housing the council in Minneapolis will allow members to tap resources from experts at the University of Minnesota Medical School and Mayo Clinic School of Medicine.

"We have the experts, we have the advocates, and I can't think of a better place to do this than right here in Minnesota," he said.

If the proposal becomes law, the council would be officially named after Chloe Barnes.

Torey Van Oot • 651-925-5049