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
Amazing Patients and Caregivers
One of the greatest thing about working at Rare Patient Voice is getting the opportunity to meet so many amazing people. Let me tell you about two. Kathryn Ames (I’ll … READ MORE
What has evolution got to do with disease?
I just finished reading The Story of the Human Body: Evolution, Health and Disease, by Daniel Lieberman, a professor at Harvard. I recommend it to anyone interested in either human … READ MORE
