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
Coalition for Hemophilia B 8th Annual Symposium
Today I attended my first Coalition for Hemophilia B Annual Symposium (the group’s 8th annual) in New York City. What a terrific event. I got to meet several of our … READ MORE
Reputation is All
Yesterday was the worst day in my professional life. What happened? Did I lose a client? Have a difficult project? Have an upset employee? No, yesterday I was accused of … READ MORE
