Living With Cystic Fibrosis

The Rare Disease Advisory Council, (RDAC) has passed in at least 25 states so far.  This is a bi-partisan effort to give voice to people and their families who are living with a rare disease.  We're talking about 7 thousand plus rare diseases, which include cystic fibrosis. The RDAC would be housed in Michigan Department of Health and Human Services. The Bonnell Foundation, along with MichBio, National Organization of Rare Disorders, RDII and a coalition of rare disease advocates (in Michigan)  have been working to get the RDAC passed for years.  A broad overview: In 2020 the RDAC began as Bill 5465, and didn’t make it very far.  Then in 2021 the coalition, The Bonnell Foundation, RDII, NORD and Dr. Rapundalo of MichBio our bill sponsor, Representative Cara Clemente, attempted to get Bill 4654 passed, but it didn’t make it through the Senate Health Policy Committee due in part to some misunderstanding about the RDAC.  Our thanks to Rep. Clemente for getting us started. The bipartisan bill, 4167, got new life