President and founder Wes Michael’s belief in the power of patient insights in improving treatment options, and ultimately lives, motivated him to found Rare Patient Voice in 2013. He discusses … READ MORE
“Beyond Limits” Explores Rare Disease Men’s Thoughts on Mental Health
On World Mental Health Day, Rare Disease Patient and Advocate David Ross Releases New Film, “Beyond Limits: Rare Men Talking Mental Health” Towson, MD, 10.10.2022 – Today, in support … READ MORE
Weekly Warrior: Meet K
“Hi, I’m K, I’m a 19 year-old male, it’s nice to meet you! I was originally diagnosed with a bunch of stuff as a child after I had a myriad … READ MORE
Weekly Warrior: Meet Tara
“My name is Tara and I have Narcolepsy type 1 and Hyper Mobility Ehler’s-Danlos syndrome (HEDs). It took a long time to get diagnosed with both of these conditions and … READ MORE
Weekly Warrior: Meet Jade
“Hello my name is Jade (@jadesjourneythroughcancer). Last year I was diagnosed with Acute Lymphoblastic Leukemia at the age of 24. This diagnosis came as a complete shock to my family … READ MORE
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