Kelsey is a queer disabled patient advocate based out of the greater Los Angeles area. They have Chronic Migraine, Fibromyalgia, Scoliosis, Hypermobility Syndrome, and other chronic conditions. They hold a … READ MORE
Need to raise funds for your org’s efforts? Join our referral program and let RPV help amplify your voice!
What is the RPV referral program? Rare Patient Voice connects patients and family caregivers with opportunities to take part in paid research studies and share their insights to help researchers … READ MORE
Weekly Warrior: Meet Allie
Allie Williams is a 41-year-old vocal music teacher with Spinal Muscular Atrophy (SMA) Type 2. She has been on one of the three available treatments for SMA, Evrysdi, for 22 … READ MORE
Weekly Warrior: Meet Denise
“Hello! I’m Denise. My major diagnoses include CVID, Hypersomnia, Asthma, Inappropriate Sinus Tachycardia, cardiac valve issues and numerous orthopedic concerns. As a writer I’ve contributed to magazines such as Shameless … READ MORE
A Thank You to Our Patients, Caregivers, and Patient Advocacy Group Partners
We’d like to thank you, the rare and non-rare disease patients, family caregivers, patient advocacy groups and members who have signed up with Rare Patient Voice. It’s our honor to … READ MORE
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