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
Weekly Warrior: Meet Sam
“Hi! My name is Sam! Born and raised in BC, Canada, now living in Washington state! When I was two weeks old I was diagnosed with Phenylketonuria, a metabolic disease … READ MORE
Weekly Warrior: Meet Ria
“Hi, my name is Ria @thisgirlisthriving. I am located in the Seattle, Washington area. I am a wife and mother. I am a skin cancer and breast cancer thriver. My … READ MORE
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