Rare Daily Staff                                                                                    

Minnesota Governor Tim Walz has signed legislation that establishes the Chloe Barnes Rare Disease Advisory Council at the University of Minnesota to advance research and treatments for rare diseases.

The bipartisan legislation, led by Senator Jeremy Miller, R-Winona, named in memory of Chloe Barnes, a two-year-old girl from Hopkins, Minnesota who died from metachromatic leukodystrophy in 2010.

The council is charged with identifying best practices to diagnose and treat rare diseases, educating the public, and advising state agencies on related policy issues.

“It’s difficult to imagine the stress, anxiety, and fear that accompany a rare disease diagnosis,” said Sen. Miller. “I am so glad those families will now be able to receive the support they need from people who understand their experience. This council will prompt faster diagnoses, advance groundbreaking research, and ultimately help find cures.”

The council will partner with legislators and other government leaders to provide expert opinion on the provider‐patient relationship, increase access to vital life‐saving medications and therapies, and bring cutting-edge research and technologies to Minnesota. Physicians, nurses, hospital administrators, rare disease advocacy organizations, caretakers, and patients themselves will make up the council.

The Council is supported by thirty-seven patient and industry organizations, including: ALS Association, Medical Alley Association, Children’s Hospitals and Clinics of Minnesota, Gillette Children’s Specialty Healthcare, Mayo Clinic, and Minnesota Rare Action Network.

Photo: Minnesota State Senator Jeremy Miller, R-Winona

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