60 minutes
We most often hear about the difficulties with diagnosis and treatment, yet there is so much more to consider around the Rare Disease journey. This panel will address how we as a community can better support Rare Disease population in their journey outside of medical treatment.


Austin Leclaire - Duchenne’s Muscular Dystrophy Patient and advocate
Katie Brandt - Director of Caregiver Support Services and Public Relations Frontotemporal Disorders Unit, MGH
Keisha Greaves - Muscular Dystrophy Massachusetts State Ambassador, and business owner of Girls Chronically Rock
Lisa Deck - Stroke & Rare Disease Advocate
Paul Kidwell - Host, Openly Rare Podcast