To make quality of life the focal point of treatment for individuals with Hemophilia B in the 21st century.
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
- A consistent monitoring and support the latest research in the Hemophilia B community.
- A primary source of information nationally and internationally.
- Factor IX 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.
- Survey and inventory families' needs and concerns.
- We hold family-oriented meetings to unite, support, and share treatment methods.