“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
London Gets a Visit from RPV
Since launching in 2013, Rare Patient Voice has expanded to Canada, the United Kingdom, France, Germany, Italy, Spain, and most recently, New Zealand and Australia. Last week, we attended our … 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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