Our latest Weekly Warrior lives with Fabry disease and posts on Instagram as @we.are.rare.2023. “I struggled with burning skin, nerve pain, headaches, and hearing loss since childhood. Misdiagnosed for years, I … READ MORE
RPV’s Pam Cusick Talks Patients and Research on The Bridge Podcast
Pam Cusick, Senior Vice President of Rare Patient Voice, was recently a guest on The Bridge, the official podcast of the University of Maryland. She discussed how RPV empowers patients … READ MORE
Weekly Warrior: Meet Betty
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
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