Minnesota makes progress battling rare diseases

This week, Minnesota commemorates "Rare Disease Day" for the first time since the state legislature authorized a "Rare Disease Advisory Council." The council was authorized in 2019 to help coordinate research and patient care.

After a few years of lobbying, the council was signed into law by Gov. Tim Walz last June to help the estimated one in 10 Minnesotans who live with one of the 7,000 known rare diseases. These diseases range from blood and muscle afflictions to neurological disorders.

Erica Barnes is the administrator of the advisory council. The council is named after her daughter, Chloe, who died in 2010 at the age of 2 after being diagnosed with a rare neurological disease. Barnes said the diagnosis was difficult and treatment options were limited. She hopes the council can help change that.

"Our task is to turn all of those aspirations for improved care into tangible goals, and we have been working for the last few months to identify those goals and priorities so we can start to address them," Barnes told attendees of a rare disease conference at the University of Minnesota, where the council is based.

The 24-member council will help coordinate efforts between the medical community, patients and government to help identify ways to help people with rare diseases.