Sen. Jeremy Miller proposes Rare Disease Advisory Council to support the 1 in 10 Minnesotans living with rare diseases

Watch the press conference here. Senator Jeremy Miller (R-Winona) announced legislation to create the Chloe Barnes Rare Disease Advisory Council, named after two-year-old Chloe Barnes of Hopkins, who died of metachromatic leukodystrophy in 2010. The Council will identify best practices to diagnose and treat rare diseases, educate the public, and advise state agencies on related policy issues. “Rare diseases don’t seem so rare when 1 in 10 Minnesotans have one. Creating a Rare Disease Advisory Council in Minnesota is so important to help families reach faster diagnoses, advance groundbreaking research, and ultimately find cures for these life-altering diseases,” said Sen. Miller. “This is a grassroots effort driven by everyday people; they’ve channeled their adversity into energy to make a positive difference for others. Read more here >>>

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