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
RPV’s Pam Cusick to Share Patient Views on Clinical Trial Awareness
In a webinar in conjunction with Patients as Partners in Clinical Research, Rare Patient Voice will be sharing new results from a survey conducted with the RPV patient community. Pam … READ MORE
Meet Our Team: Skyler Swagart, Patient Advocacy Associate
Skyler Swagart joined Rare Patient Voice in 2021 as a Data Specialist and Outreach Associate. He graduated with a BA in Digital Media: Game Design from the University of Central … READ MORE
Rare Patient Voice Surpasses 10,000 Project Mark
Towson, MD, 9.16.2024 – Since 2013, Rare Patient Voice (RPV) has empowered patients and family caregivers to have their opinions and insights heard by decision makers through participation in research. … READ MORE
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