As someone who has been living with a rare disease diagnosis for eight years, I often get asked this one question over and over again: “What advice would you give … READ MORE
Weekly Warrior: Meet Camila
“My name is Camila Almonte, I’m 15 yrs old, and I was diagnosed with Crohn’s disease in August 2020 when I was 14. This has been a long journey full … READ MORE
Weekly Warrior: Meet Kayla
“Howdy, I’m Kayla @Battle2Survive. I’m a young lady that loves life more now than ever! My diagnosis are MSA, SMAS, Autonomic Nervous System Failure, POTs, and other diagnosis. Growing up … READ MORE
Real & Rare with Sarah: May is Mental Health Awareness Month
Hello all in the RPV community! I want to take this opportunity to introduce myself. My name is Sarah Nesheim and I was recently onboarded with Rare Patient Voice as … READ MORE
Weekly Warrior: Meet Lydia
“Hi, I’m Lydia. I am 17 years old. And I am chronically ill and disabled. Growing up, I always got sick. I always complained of body aches and had poor … READ MORE
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