2020 was a very difficult year for everyone. It affected us all personally. Some businesses were hit harder than others. How did your business do? I have a friend in … READ MORE
Inspiration and Motivation
People often ask me what inspired me and what motivated me to start up Rare Patient Voice. Turns out they were two very different things. Several things and people inspired … READ MORE
The Importance of Patient Advocacy Groups
Patient advocacy groups educate and support patients and their families throughout their healthcare journey. Many of these organizations are started and run by patients or former patients themselves alongside caregivers, … READ MORE
Rare Patient Voice Expands to Europe
I have important news for patients and clients! After 7 years of inviting patients to studies in the US and Canada, we are now expanding to Europe. We’ve begun recruiting … READ MORE
The North Wind and the Sun
In first grade, our teacher, Mrs. Culver would gather us on the floor in the front of the classroom at Sandy Bank school and read stories to us. There’s one … READ MORE
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