Stories from the Road - a Column by Ann Kendall

Ann is an English professor and freelance writer with strong ties to the bleeding disorders community. She believes that advocacy is an essential skill for all connected to rare diseases; and that together, we have the power to impact and lead change by sharing our individual and collective stories, whether to meet personal needs with our medical providers or through involvement in policy work and legislation.

Teens Using the Gift of Gab for Action

I recently had the opportunity to spend the afternoon with a group of teens from our local bleeding disorders organization, HACA, which stands for Hemophilia Association of the Capital Area. Some of these kids have gone to camp together for years, and some were brand new to the group.

When You Don’t Have to Be the First

The toughest part about moving to a new city or state is locating health providers that are covered (most likely) by a new insurance plan. It’s difficult for families with hemophilia, like ours, to find pediatricians and internists. But dentists are by far the most challenging to locate. Fellow…

Posing a Challenge: The True Cost of Mental Healthcare

Many years ago, while working in the association management world, I had a director who challenged his managers (including me) to calculate the “true” cost of every program we proposed. My director’s challenge was not merely a budgetary task; it was an exercise in extreme critical thinking that moved us…