Weekly Warrior Betty lives with Pemphigus Vulgaris (PV), a rare, chronic, and painful disease. She shares her experience here.
Wes Michael Talks Patient Empowerment on 1 in 20 Rare Disease Podcast
The 1 in 20 podcast host Jonathan Cappiello was diagnosed with a rare genetic disorder that affects only 20 people in the world, 3 hydroxyacyl coa synthase deficiency, which in … READ MORE
Weekly Warrior: Meet Bri
Bri is our latest Weekly Warrior, and she lives with Gastroparesis, as well as other chronic illnesses. Bri tells her story and her commitment to sharing her voice in this … READ MORE
Season’s Greetings from RPV!
The happiest of holidays to you and yours from all of us, including our zebra mascot Rarity, at Rare Patient Voice!
Weekly Warrior: Meet Allison
“I was diagnosed with ulcerative colitis at the age of 19 in March of 2022 after experiencing symptoms for almost 6 months. I lived my life free of major health … READ MORE
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