The Coalition for Hemophilia B strives to make quality of life the focal point of treatment for individuals with Hemophilia B in the 21st century
The Coalition for Hemophilia B was founded in 1990 by Joyce and John Taylor when their son was diagnosed with moderate/severe Hemophilia B. Formed as a way of providing information about treatment options to patients and their families, as well as instigating and funding research and product development, the Coalition provides information about treatment that will improve quality of life, works to define new treatment modalities, and support efforts to eliminate the disease.
Become a Member!
Membership is free. Complete our membership form and you will receive our quarterly newsletter and an official welcome kit. You'll also be able to apply for patient & travel assistance grants and so much more. And if you want a T-shirt, just tell us your size. Join today!
REGISTER NOW for the 2019 Annual Symposium: March 14-17
The Coalition’s 2019 Annual Symposium will be held Thursday, March 14 to Sunday, March 17 at the Renaissance Orlando at SeaWorld. That’s one extra day over past symposiums! Register as an Attendee (for current families and individuals who are members of the Coalition), an Exhibitor, or a Healthcare Professional. Opportunities for New Families as well. Read More …
Advocacy News: CAAP & Healthcare Coverage
As new health plan years begin, you may discover some insurers are using a copay accumulator adjuster program (CAAP) to reimburse less for medication by pushing more “cost sharing” onto the patient. Click HERE for a slide presentation from the NHF that explains the issue in detail. We’ll keep you posted on this issue with additional articles and resources in the near future.
BScene: Hillary Goldrick
Information on treatment, scholarships, insurance assistance, and more. We also offer several booklets and DVDs that can be sent to you free of charge.
Keep up-to-date with relevant news for the hemophilia community. We publish quarterly Factor IX News, the only newsletter of its kind!
Contact the Coalition and follow us on social media to connect with us and other members of the hemophilia B community.
With a family-oriented and hands-on approach, we interact daily with the hemophilia community online and through educational symposiums, family meetings, support groups, and retreats.
Guided by a board of researchers, doctors, lawyers, parents, and patients, our team has over 27 years’ experience with hemophilia B.
We seek to educate, ensure access to the highest standard of care, and empower people with hemophilia, and their families, to advocate on their own behalf.
Important Facts and FAQs
Learn more about hemophilia B: the condition, its transmission, treatment options, and more.