“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
Weekly Warrior: Meet Cameron
“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
The Power of the Patient Voice in Rare Disease Research
In their Rare Disease Day 2025 issue, Rare Revolution Magazine featured RPV’s Senior Vice President, Pam Cusick, on why including the voices of rare disease patients and family caregivers is … READ MORE
I Care for Rare Welcomes RPV’s Wes Michael to Discuss Rare Disease Day
In a special episode of the “I Care for Rare” podcast, host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Rare Patient Voice President Wes Michael to the show in … READ MORE
Elevating Patient Voices for Rare Disease Day and Every Day
Towson, MD, 2.28.2025 – For over a decade, Rare Patient Voice (RPV) has empowered patients and family caregivers to have their voices heard through participating in all types of healthcare … READ MORE
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