The “Desperate for a Diagnosis” podcast is a forum for patients to validate they are not alone in feeling that physicians, friends and family often dismiss their symptoms. In this episode, … READ MORE
The Power of the Patient Voice in Rare Disease Research
In their Rare Disease Day 2025 issue, Rare Revolution Magazine featured RPV’s Senior Vice President, Pam Cusick, on why including the voices of rare disease patients and family caregivers is … READ MORE
I Care for Rare Welcomes RPV’s Wes Michael to Discuss Rare Disease Day
In a special episode of the “I Care for Rare” podcast, host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Rare Patient Voice President Wes Michael to the show in … READ MORE
Elevating Patient Voices for Rare Disease Day and Every Day
Towson, MD, 2.28.2025 – For over a decade, Rare Patient Voice (RPV) has empowered patients and family caregivers to have their voices heard through participating in all types of healthcare … READ MORE
Discussing the Importance of Rare Disease Day on Unlocked with Skot Waldron
“Unlocked with Skot Waldron” is a podcast dedicated to empowering and educating people to communicate more effectively. In this episode, Skot Waldron and Rare Patient Voice Senior Vice President … READ MORE
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