A group of people who have family members with rare disorders like cystic fibrosis are calling on the Michigan Senate to approve legislation that would establish a Rare Disease Advisory Council.
Laura Bonnell runs the Bonnell Foundation, which helps people with cystic fibrosis. She’s among those pushing for the legislation.
“This Rare Disease Advisory Council, which we call the RDAC, is important because it will be made up of patients, parents, nonprofits, doctors, nurses, insurance company representatives, pharma, geneticists, just a great representation of people,” Bonnel said.
Bonnell says the council could help roughly one million people in Michigan living with a rare disease.
