This is the first of our series about various diseases and health conditions that we are calling, “Get to Know.” We’ll provide some facts you may not have known about … READ MORE
Why didn’t I qualify for a survey? And will my data be used even if I didn’t?
One of the most frustrating things we hear from our patients is when they don’t qualify for a study. They are interested, they have great opinions to offer, and they’ve … READ MORE
What is the Patient Advocate Team?
Our Patient Advocate Team (PAT) is one of my favorite new developments at Rare Patient Voice over the past couple of years. When I started Rare Patient Voice in 2013, … READ MORE
Rare Can Be Good
I’m a regular Red Cross blood donor. I’m not a saint or anything. My father always gave blood, and I remember first giving in high school. I hate needles, but … READ MORE
Sympathy and Empathy
This spring I’ve been to many patient events like walks and forums – for multiple sclerosis, cystic fibrosis, sickle cell, pulmonary arterial hypertension, and Waldenstrom’s Macroglobulinemia. As you can expect, … READ MORE
