To make quality of life the focal point of treatment for people with Hemophilia B. To empower and educate our members to act as advocates on their own behalf and to ensure they have timely information about their healthcare so they can have the highest quality of life possible.
For over 28 years we have pursued our mission through our extremely family-oriented approach, because hemophilia is a disease that affects the whole family. Our programs bridge the gap and bring patients with hemophilia B together from all over the USA, connecting them with their common bond and empowering them to gain support, lifetime friends, and the knowledge needed to make important life decisions.
Our team members have decades of experience in hemophilia B and interact daily with the hemophilia community via phone, email, social media, and the web.
What We’ve Achieved
Since our founding in 1990, our mission has been to address unmet needs in our community and to be a primary source of information, nationally, for individuals with hemophilia B.
Factor Nine News, our educational newsletter, responds to needs for advocacy and information exchange and helps inform and empower individuals with hemophilia B.
We create workshops to educate families about the long-term benefits of prophylactic treatment.
We hold family-oriented meetings across the country to unite, support, and share vital information about treatment options and self-care.
We survey and inventory families’ needs and concerns.