State Rep. Jason Morgan (D-Ann Arbor) speaks at a Rare Disease Advisory Council press conference last term at the House Business Office, in Lansing.
LANSING, Mich., Feb. 27, 2025 — State Rep. Jason Morgan (D-Ann Arbor) will reintroduce legislation to create the Michigan Rare Disease Advisory Council (RDAC) in honor of Rare Disease Day tomorrow. The purpose of the council is to create a publicly available list of rare diseases and identify the best ways to enhance educational resources, care, treatment and support for those living with rare diseases, their loved ones and their health care providers.
“Receiving the diagnosis of Becker’s muscular dystrophy when I was 13 years old was incredibly difficult,” Morgan said. “Going to muscular dystrophy summer camp and seeing my peers thriving in spite of their diagnosis helped me realize what was possible for those who live with this condition. I want to make sure other Michiganders living with rare diseases receive the support they need — not only to find the best care, but to lead fulfilling lives.”
The federal Orphan Drug Act defines a rare disease as a disease or condition that impacts less than 200,000 people in the U.S. According to the Genetic and Rare Diseases Information Center in the National Institutes of Health, there are about 10,000 known rare diseases, and collectively, about 1 in 10 people (or 30 million people) in the U.S. have a rare disease.
“The rare disease community makes up 10 percent of Michigan’s population, and we should have a voice. Lawmakers make decisions that will directly impact cystic fibrosis (CF) patients and the rare disease community in Michigan. It’s important to have experts in the field to help them make educated decisions,” said Laura Bonnell of the Bonnell Foundation: Living with Cystic Fibrosis. “As a mother of two girls with CF, and the founder of The Bonnell Foundation: Living with CF, I believe the Council is key to gathering stakeholders so we can work together, look out for one another and support those impacted by rare diseases in Michigan.”
“We are thrilled for the rare disease patients and caregivers living in Michigan who will benefit from this important legislation,” said Tara J. Britt, president and founder of the Rare Disease Innovations Institute. “Those with rare diseases suffer from disparities in funding and support. Congratulations to Michigan for addressing this through strategic legislation.”
“A Michigan Rare Disease Advisory Council enacted by statute is essential to give individuals living with a rare disease and their caregivers a committed voice in state government by advising policymakers on obstacles that patients and their families face in obtaining proper treatment and care for their conditions”, said Stephen Rapundalo, Ph.D., president and CEO of MichBio, the statewide biosciences industry association. “An RDAC is critical to ensure that the necessary scientific and medical expertise, research discoveries, novel therapies being developed, and knowledge sharing about available resources can better inform Michigan’s rare disease community and improve lives.”
Originally introduced in March 2023 as House Bill 4167, the Michigan House overwhelmingly voted to pass the legislation. It was sent to the Senate, where it was reported favorably from committee but ultimately did not receive a vote. Morgan will reintroduce the legislation the week of March 3, 2025.
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