Rare Patient Voice President Wes Michael discussed empowering patients through research recently on the Connecting Patients with Research podcast, hosted by Joel Nelson.
RPV’s Rare Caregiver Survey Featured in Rare Revolution Magazine
Earlier this year, Rare Patient Voice survey 735 caregivers of loved ones living with a rare disease on how their caring role has affected their lives. The survey results then … READ MORE
Wes Michael Discusses the Patient Voice on Raising Rare Podcast
Presented by Salem Oaks and CureGPX4, the “Raising Rare” podcast follows a parent’s journey to find a treatment for their child’s ultra rare genetic disorder. The podcast also features stories of other rare disease families, … READ MORE
Rare Revolution and Pam Cusick on Bringing Patients and Researchers Together
RARE Revolution Magazine Engagement Associate Becky Pender recently caught up with Rare Patient Voice Senior Vice President Pam Cusick to learn how RPV is turning the tide for people living … READ MORE
RPV’s Pam Cusick on A Spoon Full of Strength Chronic Illness Podcast
“Spoon Full of Strength” is a new podcast discussing all things chronic, for patients and their caregivers. In this episode, RPV Senior Vice President Pam Cusick speaks with hosts Rachel and … READ MORE
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