sharing the stories of people affected by rare diseases with a focus on their experiences coping with the COVID-19 pandemic
Amanda Kalinsky shares her journey of discovering the cause of a family history of early and traumatic deaths and her decision to confront it head on.
Sociologist Maria Kefalas discusses the experience of rare disease as a parent, spouse and advocate during the pandemic.
In this episode, high school senior Laura Masciola shares her experiences living with Juvenile Idiopathic Arthritis.
In this episode, University of Vermont freshman Julia Cohen shares her experience living with an Ehlers Danlos Syndrome diagnosis.