“Empowered Caregivers” podcast host Shelly Drymon is a caregiver for her partner Steve, who was diagnosed with transverse myelitis in September 2023. The podcast is for spouses and partners who … READ MORE
Happy Valentine’s Day from RPV!
At Rare Patient Voice, we love our patients, family caregivers, clients, and colleagues! Our zebra mascot Rarity and all of us at RPV wish all of you a Happy Valentine’s … READ MORE
Weekly Warrior: Meet Lisa
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
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