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
Our mission is to educate, empower, advocate, and ensure that individuals with hemophilia B have timely information about their healthcare so they can have the highest quality of life possible. For over 27 years we have pursued this mission through our extremely family-oriented approach, because hemophilia is a disease that affects the whole family. We provide information about treatment options to patients and their families, work 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!
Challenge. Change. Live. B.
The Generation IX Project is a call to action for young adult mentors (ages 18-30) living with hemophilia B who want to challenge themselves in an immersive mentorship program so you can guide the project’s teens. The program for teens (ages 14-17) is an experience beyond the classroom with a high ropes challenge course, hiking, star-gazing campfires, and good old-fashioned play. The programs take place at at YMCA Camp Collins just outside of Portland, Oregon. Participants must have hemophilia B.
Applications are due April 26. There are a limited number of spaces. After your application has been reviewed you will be notified of your acceptance into the program. To begin your application, head to ApplyGenerationIXProject.com.
NEW: The Beats Music Program, July 31-August 4, 2019 in Nashville, TN
Deadline extended to March 29th. Whether you have serious music ambitions or enjoy music as a therapeutic outlet, this program could be for you! The 2019 music camp is for Coalition members age 18 and over who are musically inclined. 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.