For over 27 years, 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. We are extremely family-oriented, since hemophilia is a disease that affects the whole family.
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
- 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
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 to unite, support, and share treatment methods.