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

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

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

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

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