Minneapolis, MN – On Monday, May 20, 2019, hours before the Minnesota Legislature adjourned the first part of its 91st legislative session, the House and Senate voted unanimously to pass SF 973, establishing the Chloe Barnes Advisory Council on Rare Diseases. The council is named in honor of two-year-old Chloe Barnes who passed away from metachromatic leukodystrophy in 2010. The council is comprised of members from across the health innovation and care spectrum, and will be a resource for rare disease patients and their families, as well as serve as a place to catalyze translation research to treat and cure rare diseases.
The National Institutes of Health classifies a disease as rare if it affects fewer than 200,000 individuals, currently affecting 1 in 10 Minnesotans. There are 7,000 known rare diseases and only 500 treatments. This legislation provides four years of funding to the University of Minnesota’s Board of Regents to create an advisory council compromised of doctors, researchers and patient advocates who will be able to identify best practices in early diagnosis, treatment and research for rare diseases.
“The Chloe Barnes Advisory Council on Rare Diseases, housed by the University of Minnesota, will help thousands of families and individuals living with a rare disease, enabling the University to provide advice on research, diagnosis, treatment and education related to rare diseases.” Said Shaye Mandle, President & CEO of Medical Alley Association. “There is no better place for this council than right here in Medical Alley at the University of Minnesota, where groundbreaking research and innovation happens every day.”
Medical Alley Association thanks for their tireless efforts Senator Jeremy Miller and Representative Alice Mann, as well Erica Barnes and the countless advocates who helped make the passage of this legislation possible. The Association looks forward to continuing to work with lawmakers to enable Medical Alley members to help further solve healthcare’s biggest challenges.
Founded in 1984, the Medical Alley Association supports and advances the global leadership of Medical Alley’s healthcare industry, and its connectivity around the world. MAA delivers the collective influence, intelligence and interactions that support Medical Alley.