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!
Registration Open for Our Family Meetings on the Road
We’re hosting 13 educational meetings across the country in the spring and fall 2019, to share information and resources and bring families together to build a support network! Our Factor 9 Family Meetings are free for those living with hemophilia B and their family members but you must register online. All meetings are Saturdays.
Challenge. Change. Live. B.
The Generation IX Project is a call to action for young adult mentors (ages 18-30) who want to challenge themselves in an immersive 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. Both programs take place at a YMCA Camp Collins outside of Portland, Oregon. Participants must have hemophilia B.
There are a limited number of spaces, so apply soon. After your application has been reviewed you will be notified of your acceptance into the program. To begin your application, head to ApplyGenerationIXProject.com.
The Beats Music Program, July 31-August 4, 2019 in Nashville, TN
UPDATE: program attendees will be notified Monday April 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…
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.