Rare Disease Day Collaboration: Patients and Caregivers Spill the Tea on Parents, Patients, and Podcasts

Welcome to this special podcast cross collaboration with HITea With Grace, Parents as Rare, One Upon a Gene Podcast, Simply Unbreakable podcasts on Rare Disease Day - February 28th! 

Grace Vinton moderated a panel with Effie Parks, Adam Johnson, and Kristy Dickinson on the topic of “Parents, Patients, & Podcasts - Incorporating the Rare Disease Community in HITMC“ at the annual HITMC (healthcare marketing and communications) conference this year. The conversation was so powerful, we all knew we had to follow it up with a proper podcast collaboration, to amplify the message. 

While each gene is unique, Effie, Adam, and Kristy all share the experience of what it looks to have your life turned upside down because you are missing one single protein in your cells. Science exists to diagnose and treat these rare diseases earlier and faster than ever, but it takes education, passion, focus, funding, innovation, community and more to make a meaningful impact. One rare disease at a time. 

The question we posed the audience at HITMC and pose the listeners to this podcast is, “How can you impact rare disease in your area of influence today?” We give some ideas, but would love to hear yours too!