The Coalition for Hemophilia B is pleased to share the news that the community will be highlighted in an episode of Medical Stories, a new series to be presented on the Public Broadcasting System (PBS).

“We applaud PBS affiliate stations for Public Television for airing the ‘Medical Stories’ Special and bringing attention to hemophilia as a rare disease. This program is a step toward providing education to the public about hemophilia in general. It strives to elevate the understanding of the history of hemophilia and highlight just how far treatment, and the hemophilia community, have come. It helps to build awareness and empathy of the impacts of hemophilia, but it did not encompass all aspects of the hemophilia patient journey, including women diagnosed with the disease. We wish they had been able to cover more of these aspects, but we are glad that they were able to give the public at least a glimpse of what hemophilia is all about. The full picture of hemophilia, and the experiences of each member of the community, is something that can be built upon with continued advocacy efforts.”

—Kim Phelan, Vice President, The Coalition for Hemophilia B

The Medical Stories series is sponsored in part by CSL Behring, a manufacturer of specialized therapies for hemophilia and other conditions. Through CSL Behring’s sponsorship support of the series, we are proud to present an episode featured within season one, titled Living a Full Life with a Royal Disease. Although the segment is about hemophilia in general, it focuses in particular on hemophilia B. Much of the piece shares the personal life journey of our member Benjamin Shuldiner.  Ben is well known in our community. A Harvard-trained educator who became the youngest high school principal in the U.S. when he founded New York City’s High School for Public Service in 2002, Ben has inspired countless young people to never let a medical condition stop them from living their fullest lives. 

With a proud 30-year history as the only organization devoted specifically to advancing the health and well-being of people living with hemophilia B, the Coalition for Hemophilia B applauds Ben and everyone involved in the project for telling Ben’s unique story and highlighting this small but mighty community. 

We encourage all our members to watch this episode here on our website or when it airs on your local PBS station. We also encourage friends, family, youth, educators, and anyone who would like to understand more about hemophilia B to take advantage of the many educational and informational resources offered by the Coalition. Many additional resources are also available from the National Hemophilia Foundation, the Hemophilia Federation of America, local chapters, and a range of other nonprofit and industry groups.

Previously Aired on:

KVCR-DT (Los Angeles) 6/10/20 6:30PM
WCML-DT (Michigan) 6/14/20 3PM
WLAE-DT (New Orleans) 6/22/20 7PM
WTJX-DT3 ( Charlotte Am/Virgin Islands) 6/11/20 12PM
WTJXD-T3 6/11/20 10PM
WTJX-DT3 6/18/20 10PM
WTJX-DT3 6/24/20 7:30PM