At Rare Patient Voice, we love getting out from behind our screens and meeting our community in person. There’s nothing better than being in person and hearing the stories that … READ MORE

Kathryn was diagnosed with colon cancer in 2024, and is passionate about contributing to research, specifically research aimed at young adults. She loves working with Rare Patient Voice so much … READ MORE

“Hi lovely spoonie friends! My name is Autumn Meadows (she/her), and I’m a 21-year-old disability, chronic illness, and mental health advocate from western Colorado, living with M.E, Dysautonomia, and several … READ MORE

“Our baby boy Cameron Thomas Reinhold was born on December 16, 2024 at 8:48 pm weighing 6 pounds 14 ounces and 19 inches long. I had a smooth first time … READ MORE