Scientific literature can be intimidating, even to people with hemophilia and other bleeding disorders. Not so for three consumers selected to attend the National Hemophilia Foundation’s new therapies workshop.
When I was growing up, Camp Ailihpomeh was more than just a week away from my parents to hang out in the boonies of Central Texas. It was a time every year that I looked forward to as much as Christmas or my birthday, if not more.
The life stories of 21 men with hemophilia are chronicled in "The Gift of Experience: Conversations About Hemophilia," which was developed from an oral history project at the Boston Hemophilia Center in 2004–2005.