Living with a rare disease isn’t just a physical battle—it carries a profound mental health burden, from isolation to uncertainty about the future. Raising awareness means recognizing the emotional toll … READ MORE
Wes Michael Discusses Mental Health and Rare Disease on the Caregiver Relief Podcast
Wes Michael of RPV recently visited the Caregiver Relief Podcast to talk about the “shadows” of the rare disease experience, including the mental health burden on caregivers, the frustration … READ MORE
HealthCare UnTold Podcast Welcomes RPV’s Pam Cusick
The HealthCare UnTold podcast gives a voice to everyday heroes, sharing their stories to improve health information for vulnerable communities. In this thought-provoking interview, host Barbara Ann Garcia interviews Rare … READ MORE
RPV Marks Rare Disease Day 2026 With Support for Rare Community
On Rare Disease Day, we recognize the more than 300 million people worldwide living with a rare disease — and the countless family members, friends, and caregivers who help to … READ MORE
New Report Shows Rare Disease Is a Mental Health Burden on Patients & Caregivers that Healthcare Professionals May Not be Meeting
Rare Disease Is a Mental Health Burden on Patients and Caregivers that Healthcare Professionals May Not be Meeting, Reveals Latest Global Data from Konovo While 82% of rare disease patients … READ MORE
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