Our latest Weekly Warrior is Mackenzie, caregiver to her son Josiah. He lives with Familial cold autoinflammatory syndrome, a rare genetic disorder characterized by episodes of rash, fever, and joint … READ MORE
Weekly Warrior: Meet Jamie
Jamie, our latest Weekly Warrior, is a mom of two living with Lupus. She shares her story to make others feel supported in their own health journeys. https://www.linkedin.com/feed/update/urn:li:activity:7171893544230576129
RPV Celebrates the Rare Community, on Rare Disease Day and Everyday
Towson, MD, 2.29.2024 – For over a decade, Rare Patient Voice (RPV) has empowered patients and family caregivers to have their voices heard through participating in research studies. On this … READ MORE
Pam Cusick Interviewed on Unlocked with Skot Waldron
The lead up to Rare Disease Day continues! RPV’s Pam Cusick recently sat down with communications expert Skot Waldron for an interview on his podcast, “Unlocked with Skot Waldron.” In … READ MORE
Wes Michael Interviewed on Live Life Rare Podcast
As Rare Disease Day 2024 approaches, Rare Patient Voice leadership have been interviewed on a number of rare disease podcasts. On the Life Life Rare podcast, RPV’s Wes Michael talked … READ MORE
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