Want to create an interactive transcript for this episode?
Podcast: Living With Cystic Fibrosis
Episode: Rare Disease Advisory Council (RDAC) with Rep. Jason Morgan and Dr. Stephen Rapundalo
Description: 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...