“My name is Emily (@healmewholeheartedly) and I am a 32 year-old living with Sjögren’s Syndrome, FSGS, and Pulmonary Arterial Hypertension (PAH). I’ve known chronic illness my whole life, and … READ MORE
Weekly Warrior: Meet Dani
“Hi, I’m Dani. I’m 19 and from New Zealand. I’m a survivor of E-coli O157:h7 and Hemolytic Uremic Syndrome (HUS). Both life threatening illnesses have left me with multiple chronic … READ MORE
Meet Our Team: Jennifer Harscheid, Project Manager
What began as a phone call between friends led to a dream job for Rare Patient Voice Project Manager Jennifer Harscheid. “I began working with Rare Patient Voice in September … READ MORE
A Testimonial from Glenna Crooks, Strategic Health Policy International
“Working with the RPV team was a pleasure from start to finish. Each team member delivered flawless support, including during some necessary hand-offs from one to the next. They were … READ MORE
Weekly Warrior: Meet Kaitlyn
“Hello everyone! I’m Kaitlyn ( @trusting.my.gut ). I am 22 years old and live with a whole list of conditions including POTS, Chronic Lyme Disease, PCOS, Cyclic Vomiting Syndrome, Hidradenitis … READ MORE
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