Our latest Weekly Warrior is Sarah, a mom and caregiver to her 11 year-old daughter who lives with Wiedemann-Steiner syndrome, a rare genetic condition that can affect multiple organ systems. … READ MORE
Happy Fourth of July from RPV!
Wishing everyone a safe and happy July 4th, from all of us (including Rarity, decked out here as Uncle Sam) at Rare Patient Voice!
Rare Patient Voice Basics
Wes Michael, President and Founder of Rare Patient Voice, provides an accessible explanation of how RPV works in this video primer.
Weekly Warrior: Meet Brandee
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
Weekly Warrior: Meet Jackie
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
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