Hemophilia Community Resources

Tools & Resources / Community Resources


You're not alone. Discover a world of compassion, inspiration, and support.

Comprehensive Health Education Services that include inhibitor camps, newsletters and the Ultimate Inhibitor Adventure

Shire is proud to partner with Comprehensive Health Education Services (CHES) to bring you special programs for people and families living with inhibitors. One of the programs, presented by CHES and GutMonkey, is Leverage: The Ultimate Inhibitor Adventure for young adults with inhibitors.

Learn about Leverage

Find a camp that's all about inhibitors.

We proudly promote camps created just for children with inhibitors. Inhibitor Family Camp, developed by CHES, offer a chance for children and their families to find education, camaraderie and support—while having fun, too.

Learn about camp

Read all about a newsletter just for you.

CHES also offers Lifelines for Health, a newsletter just for the inhibitor community. Sponsored by Shire, it's the first-ever national newsletter all about inhibitors. It's created to support patients, families, and caregivers.

Find an issue

Show your support. Get walking.

The National Hemophilia Foundation (NHF) sponsors hemophilia walks coast to coast. Chances are, there's one near you, filled with energy, excitement, and people of all ages. Show your support, connect with the bleeding disorders community, and get a little exercise, too.

Find a walk
National Hemophilia Foundation

Check out an NHF Chapter or event.

Connect with other families in your area who understand life with hemophilia. Your local chapter offers a variety of programs and can be a great source of education, inspiration, and new ideas for managing inhibitors.

Find a chapter

Shire is proud to co-sponsor the NHF Regional and National Inhibitor Education Summits. It's a great chance to learn about managing inhibitors and interact with patients, families, and healthcare professionals.

Get details
Hemophilia Federation of America

More resources to inspire you.

The Hemophilia Federation of America (HFA) offers support of all kinds. Find information, ideas, and a welcoming community.

Learn more

Want to find other types of support? Check out our Patient Stories section.

FEIBA [Anti-Inhibitor Coagulant Complex] Indications

What is FEIBA used for?
FEIBA (Anti-Inhibitor Coagulant Complex) is used for people with Hemophilia A or B with Inhibitors to control and prevent bleeding episodes, before surgery, or routinely to prevent or reduce the number of bleeding episodes. It is NOT used to treat bleeding conditions without inhibitors to Factor VIII or Factor IX.

Detailed Important Risk Information

When should I not take FEIBA?
You should not take FEIBA if you have had hypersensitivity or an allergic reaction to FEIBA or any of its components, including factors of the kinin generating system, if you have a condition called Disseminated Intravascular Coagulation, which is small blood clots in various organs throughout the body, or currently have blood clots or are having a heart attack. Make sure to talk to your healthcare provider about your medical history.

What Warnings should I know about FEIBA?
FEIBA can cause blood clots, including clots in the lungs, heart attack, or stroke, particularly after high doses of FEIBA or in people with a high risk of blood clots. Patients that have a risk of developing blood clots should discuss the risks and benefits of FEIBA with their healthcare provider since FEIBA may cause blood clots. FEIBA can cause hypersensitivity or allergic reactions and infusions site reactions, and these reactions can be serious. Because FEIBA is made from human plasma, it may carry the risk of transmitting infectious agents, for example, viruses, including Creutzfeldt-Jakob disease (CJD) agent, and the variant CJD agent. Although steps have been taken to minimize the risk of virus transmission, there is still a potential risk of virus transmission.

What should I tell my healthcare provider?
Make sure to discuss all health conditions and medications with your healthcare provider. If you are pregnant or are planning to become pregnant, or are a nursing mother, make sure to talk with your healthcare provider for advice on using FEIBA.

What are the side effects of FEIBA?
The most frequent side effects of FEIBA are: low red blood cell count, diarrhea, joint pain, hepatitis B surface antibody positivity, nausea, and vomiting. The most serious side effects of FEIBA include: hypersensitivity reactions, including anaphylaxis, stroke, blood clots in the lungs, and blood clots in the veins. Always immediately talk with your healthcare provider if you think you are experiencing a side effect.

What other medications might interact with FEIBA?
The use of other clotting agents with FEIBA is not recommended, for example, tranexamic acid and aminocaproic acid. Be sure to talk with your healthcare provider and pharmacist about all medications and supplements you are taking.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about FEIBA with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.feiba.com/us/forms/feiba_pi.pdf or by calling 1-800-423-2090 and selecting option 5.