“Hi everybody ! My name is Abby @veggie_dancer_recovering. I have gastroparesis, POTS, hEDS, SMAS, Crohn’s disease and a neurogenic bladder. I have separate G and J tubes, a hickman central … READ MORE
Weekly Warriors: Meet Madison
In a new feature, each week we will spotlight an amazing patient or caregiver who is part of the Rare Patient Voice community. “Hi I’m Madison! At birth I was … READ MORE
It’s the Most Difficult Time of the Year: Fourth Quarter Blues
Rare Patient Voice President Wes Michael shares a song about the hectic last month of the last quarter – the busiest time of the year to get projects closed, invoices … READ MORE
Wes Michael on RPV in Europe
The patient voice is powerful, and helping patients and caregivers share their opinions with researchers and companies developing products to improve lives is the cornerstone mission of Rare Patient Voice. … READ MORE
RPV’s Pam Cusick on Supporting Ourselves and Others
Taking time to think about who we are and where we are going can easily fall by the wayside in our busy lives. But practicing some introspection, goal-setting, and self-care … READ MORE
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