“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
Meet Our Team: Christina Cooper, Project Scheduler
Christina Cooper began working for Rare Patient Voice as a Project Scheduler in 2022. She joined the RPV team because she is passionate about helping people and making a … READ MORE
Weekly Warrior: Meet Allison
Our latest Weekly Warrior is Allison, a young woman living with Hypermobile Ehlers-Danlos syndrome. She shared her story with us recently in a Facebook video. https://www.facebook.com/reel/3344744615786203?fs=e&s=TIeQ9V&mibextid=0NULKw
Weekly Warrior: Meet Grace
“Hi! I’m Grace. I’m 23 and a warrior. I was diagnosed with Hypermobile Ehlers-Danlos, a connective tissue disorder caused by defects in a protein called collagen which affects more than … READ MORE
Weekly Warrior: Meet Phoebe
“Hi there!! My name is Phoebe, I’m 24 and I’m from Sydney, Australia. I have Cystic Fibrosis and a bunch of other chronic illnesses; mostly co-morbidities from my CF, but … READ MORE
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