Mirza Rakovac joined Rare Patient Voice in May 2024 as a Helpdesk Specialist, where he plays a key role in assisting respondents by answering their questions about studies, payments, and … READ MORE
RPV’s Pam Cusick Talks Patient-Centered Research on Desperate for a Diagnosis
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
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