Mekenzie, who lives with Crohn’s disease, is our latest Weekly Warror. She is also an RPV staffer and member of our Patient Advocacy team! https://www.linkedin.com/feed/update/urn:li:activity:7164284418306625538
Weekly Warriors: Meet Kyla and Bella
Kyla and her daughter Bella are our newest Weekly Warriors. Little Bella was born with cartilage-hair hypoplasia, a rare disorder of bone growth. She has now had two major transplants … READ MORE
A Closer Look at RPV’s Role in Research
As a lead up to Rare Disease Day 2024, PicnicHealth recently interviewed Rare Patient Voice‘s Marketing and Communications Director, Laura Mullen, on RPV’s role in research, how we work with … READ MORE
The Gold Standard: Quality Takes Time
Rare Patient Voice President and Founder Wes Michael discusses why it’s not always easy to become a member of RPV. The simple answer is: quality takes time. We have to … READ MORE
Weekly Warrior: Meet Kiera
Kiera is our latest Weekly Warrior. An advocate and researcher, she lives with Addisons disease and Ehlers-Danlos syndrome. She shares her story here. https://www.linkedin.com/feed/update/urn:li:activity:7159210935558053888
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