Rare Daily Staff
The Minnesota Senate unanimously passed legislation that will create a Rare Disease Advisory Council, which will provide a conduit for rare stakeholders an avenue to make formal recommendations for policy to address issues faced by people with rare conditions.
The bipartisan bill, authored by Republican Senator Jeremy Miller, creates the Chloe Barnes Rare Disease Advisory Council at the University of Minnesota. The council is named after a two-year-old Minnesota girl who died from metachromatic leukodystrophy in 2010.
“The first things that families seek after a life-altering diagnosis are guidance and support,” said Miller. “But with rare diseases that information can be difficult to come by. Creating this new Rare Disease Advisory Council will help families receive 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 life‐saving medications and therapies, and bring research and technologies to Minnesota. The council is expected to give voice to physicians, nurses, hospital administrators, rare disease advocacy organizations, caretakers, and patients.
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.
The council is supported by 37 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.
A companion bill is working its way through the Minnesota House.
Photo: Republican Senator Jeremy Miller