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. I’m proud to play a small part in their story.”

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 have a seat at the table.

To facilitate close collaboration with experts at the Mayo Clinic School of Medicine and the University of Minnesota Medical School, the Council will be established within the University of Minnesota.

“When my daughter Chloe was diagnosed with the rare disease metachromatic leukodystrophy I felt like I was all alone. Nobody I knew could even pronounce the disease let alone knew anyone else with it. But as I have advocated for rare diseases over the last several years I have heard the same barriers to care as my daughter’s replicated time and time again across patient populations. There is power in addressing our needs as a group”

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 Americans. There are an estimated 30 million (1 in 10) Americans living with a rare disease—and nearly half of these patients are children. Treatments are only available for five percent of the more than 7,000 known rare diseases, and diagnosis takes an average of 7-8 years. The responsibility of funding research typically falls on affected families, their friends, and small patient organizations. However, advances in diagnostics and gene therapies have significantly increased the odds of discovering breakthrough treatments.

SF 973 was introduced last legislative session, and is currently 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.

Speakers:

• Senator Jeremy Miller (R-Winona)
• Erica Barnes, Founder of Chloe’s Fight Rare Disease Foundation and mother of Chloe Barnes, who passed away from a rare disease at two years old
• Ramaiah Muthyala, President of Indian Organization for Rare Diseases and Associate Professor at the University of Minnesota
• Abbey Hauser, a young adult with Classical Ehlers-Danlos Syndrome, a genetic connective tissue disorder
• Dr. Paul Orchard, Professor of Pediatrics in the Division of Blood and Marrow Transplantation at the University of Minnesota Medical School