Rare Disease Advisory Council bill signed by Governor Tim Walz

Jun. 26, 2019

Rare disease advocates joined Governor Tim Walz on June 18, 2019 for a ceremonial signing of the bipartisan Rare Disease Advisory Council bill. The bill will create the Chloe Barnes Rare Disease Advisory Council at the University of Minnesota to coordinate the study and treatment of rare diseases. The bill, named in memory of two-year-old Chloe Barnes, a Hopkins girl who passed away from metachromatic leukodystrophy in 2010, will support the 1 in 10 Minnesotans living with rare diseases by identifying best practices to diagnose and treat rare diseases, educating the public, and advising state agencies on related policy issues. Erica Barnes, Chloe's mother, played a lead role in advocating for passage of the legislation. She is a member of the University of Minnesota Rare Disease Day Planning Committee.