RPV’s newest Weekly Warrior is Michelle, aka @MamaBearforRare. Her young daughter Hailey lives with a rare genetic disease called Jordan’s Syndrome. Michelle recently shared their story in this video linked … READ MORE

“Hi, I’m Keyla, I’m 38 years old and I have Crohn’s Disease, and I am a care partner to a 13-year-old with UC. I also have Thoracic Outlet Syndrome, Endometriosis, … READ MORE

“My name is Brenda Fregger, I was in my mid 30’s when the first symptoms of a rare incurable disease emerged; it took six years, five doctors, nine orthopedic surgeries, … READ MORE