“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
Weekly Warrior: Meet Mike
“Hi, my name is Mike Riley! I’m 40 years old and I’m from Cape Cod, Massachusetts. I have a debilitating illness called Duchenne Muscular Dystrophy. I was born in … READ MORE
Wes Joins RPV Community Member on “Real Thoughts and Conversations” Podcast
On Tuesday, May 10, RPV President Wes Michael was a guest on “Real Thoughts and Conversations,” a podcast hosted by Leon Thomas. The topic was patient advocacy and rare disease, … READ MORE
Weekly Warrior: Meet Meghan
“My name is Meghan and my rare disease is Acute Myeloid Leukemia. I was diagnosed in 2019 at the age of 23. For months I experienced symptoms like loss of … READ MORE
Weekly Warrior: Meet Coop
“By the time Coop was just a few months old he already had many surgeries under his belt. After the biggest of them, open heart surgery, the attending warned her … READ MORE
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