Mission

To make quality of life the focal point of treatment for individuals with hemophilia in the 21st century.
“Even if I am only like a little mouse, taking bites around the edge of the cheese, I feel eventually I am going to make a difference. It is going to take a lot of bites and a fair amount of time, but it will happen. Meanwhile, we’ll keep biting away.”  John R. Taylor, Jr - Founder

Our Vision

We are dreaming of a world with

• A treatment we can all afford
• Prophylaxis for everyone
• Better delivery - no more infusions
• A longer half-life - maybe one pill a month

There are many steps to a cure. Let’s take them.

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.

Accomplishments

• Monitor and support research.
• Primary source of information nationally and internationally.
• Factor IX News: our educational newsletter responds to needs for information, advocacy, and scientific research exchange.
• Workshops: educate families about the long-term benefits of prophylactic treatment.
• Survey and inventory families. needs and concerns.
• Family-oriented meetings to unite, support, and share treatment methods.