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
Learn More About the RPV Premium Outreach Package
The Rare Patient Voice Golden Rule means recruiting the right patients, at the right time, for the right studies. How do we do that? Our Patient Advocacy Team is always … 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.
- 1
- 2
- 3
- …
- 77
- Next Page »