Our Mission

To make quality of life the focal point of treatment for people with Hemophilia B in the 21st Century. To  educate, empower, advocate, and ensure they have timely information about their healthcare so they can have the highest quality of life possible. For over 27 years we have pursued our mission through our extremely family-oriented approach, because hemophilia is a disease that affects the whole family.

Our Vision

We dream of a world with ...

  • A treatment everyone can afford

  • Prophylaxis for every patient

  • A better delivery system - no infusions

  • A longer half-life

Our Goals

  • To empower people with hemophilia and their families to act as advocates on their own behalf

  • To help ensure that each individual and their loved ones have the highest standards of product and the best possible quality of life

Our History

Founded in 1990 by Joyce and John Taylor when their son was diagnosed with moderate/severe Hemophilia B, the Coalition was formed to provide information about treatment options to patients and their families that will improve quality of life, as well as to instigate research and product development.

When your child has hemophilia, it’s all encompassing. As a family, you struggle through it every day. But what started as an unknown, daunting journey has developed into an expedition of hope.
— John Taylor, founder

What We've Achieved

  • We consistently monitor and support the latest research in the Hemophilia B community.

  • We are a primary source of information, nationally and internationally.

  • Factor Nine News, our educational newsletter, responds to needs for information, advocacy, and scientific research exchange.

  • We've created workshops to educate families about the long-term benefits of prophylactic treatment.

  • We survey and inventory families' needs and concerns.

  • We hold family-oriented meetings across the country to unite, support, and share treatment methods.

  • Read more about our programs.