Weekly Warrior Lisa lives with multiple chronic conditions and posts on Instagram about her journey, using the handle @autoimmunewarriorinfo. “In July 2004 I woke up in severe body pain. It seemed … READ MORE
Weekly Warrior
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
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