Amy Gietzen is a passionate patient advocate, public speaker, program developer, and educator. Amy was diagnosed with Systemic Scleroderma at the age of 19. Several years later she was also … 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
Intellus Honors RPV’s Wes Michael with Advocacy Award
At the Intellus Fall Institute awards ceremony on September 12, RPV President Wes Michael received an Intellus Impact Award for Advocacy, recognizing his contributions in empowering patients and family caregivers to … READ MORE
RPV and the Patient Voice on The Pickle Jar Podcast
“The Pickle Jar Podcast” host Jill Battle lives with a rare autoimmune disease. Her mission is to advocate, educate and empower people living with Addison’s disease and other invisible illnesses to … READ MORE
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