Wes Michael, President and Founder of Rare Patient Voice, provides an accessible explanation of how RPV works in this video primer.

Brandee is our latest Weekly Warrior. She lives with Von Willebrand disease, a bleeding disorder caused by the deficiency of the pro-von Willebrand factor. People living with Von Willebrand may … READ MORE

Our latest Weekly Warrior is Jackie, a journalist who writes about her experiences living with chronic illnesses and rare diseases including Crohn’s disease, Ehlers-Danlos syndrome, and POTS. She shares her … READ MORE

Our latest Weekly Warrior is Michelle. She began her chronic illness journey in 2012 at age 18 and was diagnosed with Hypermobile Ehlers-Danlos Syndrome, a genetic connective tissue disorder. Michelle … READ MORE

Our newest Weekly Warrior is Lily, who lives with Ankylosing Spondylitis and Fibromyalgia. In the clip linked to below, she discusses her chronic disease journey and how her life has … READ MORE