On May 8, 2019 the Minnesota Senate unanimously passed legislation that would create a new rare disease advisory council at the University of Minnesota to facilitate the study and treatment of rare diseases. Erica Barnes, co-founder and Board Chairperson of Chloe’s Fight Rare Disease Foundation, worked tirelessly for the creation and passage of this bill. Chloe’s Fight Rare Disease Foundation is affiliated with the Lysosomal Disease Network.
The bipartisan bill, authored by Sen. Jeremy Miller (R-Winona), created the ‘Chloe Barnes Rare Disease Advisory Council’ at the University of Minnesota. The late Chloe Barnes was born with metachromatic leukodystrophy, and was the daughter of Erica Barnes. Chloe died of metachromatic leukodystrophy at the age of two in 2010.
The work of the Chloe Barnes Rare Disease Advisory Council is to identify best practices to diagnose and treat rare diseases; to educate the public; and to advise state agencies on related policy issues. To facilitate close collaboration with experts at the University of Minnesota Medical School and the Mayo Clinic School of Medicine, the Council will be established within the University of Minnesota. 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.
Senator Miller said, “Creating this new Rare Disease Advisory Council will help families receive faster diagnoses, advance groundbreaking research, and ultimately help find cures. I am especially proud of the amazing grassroots effort behind this bill. This was driven by everyday people who took a difficult situation and channeled their frustration, their grief, and their anxiety into something incredibly positive. This includes the family of Chloe Barnes and the Quimby family from Winona who lost their 5-year-old son Gavin to a rare disease. I’m proud to play a small part in their story.”
The interesting details about the membership of the Chloe Barnes Rare Disease Advisory Council and the members’ appointment-term are here (click on the “Bill Text” tab). Initial appointments to the Chloe Barnes Rare Disease Advisory Council shall be made no later than September 1, 2019.