Gov. Walz approves Rep. Mann's bill creating Rare Disease Advisory Council
ST. PAUL, MN – Governor Walz today held a ceremonial signing for Rep. Alice Mann’s bipartisan bill establishing an advisory council at the University of Minnesota focused on rare diseases. The council will provide advice on research, diagnosis, treatment and education related to rare diseases.
“This legislation will be a lifeline to families, like Chloe Barnes’, who have devoted their lives to a vision of a world where every rare disease has a treatment option,” said Rep. Alice Mann (DFL – Lakeville). “My hope is that this will help extend the highest standard of health care to people with all medical conditions.”
The bill will also identify problems faced by patients with a rare disease when changing health plans, and include recommendations on how to remove obstacles faced by those patients in finding a new health plan that meets their needs.
The council will be named after two-year-old Chloe Barnes, who in 2010 lost her life to a rare degenerative disease, metachromatic leukodystrophy, which has no cure.
Rep. Alice Mann has served patients at Northfield Hospital’s emergency room and the Lakeville Family Health Clinic as a family practice physician.
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