Meet Our Community

A group of HEMLIBRA ambassadors attend NHF Bleeding Disorders Conference 2019.

HEMLIBRA® (emicizumab-kxwh) Meet Our Community Liz icon

“You’ll find strength in connecting and leaning on other hemophilia community members who understand exactly what you’re going through.”

— Caregiver Ambassador Liz

Having the support of people who understand hemophilia A can make a big difference. Our ambassadors are people like you who decided to make the switch to HEMLIBRA. They’re here to help.

Ambassadors are compensated for their participation.

HEMLIBRA® (emicizumab-kxwh) Meet Our Community Matt icon

“It’s a message of hope that things will continue to improve from one generation to the next. Hemophilia may be what unites us, but it will never be what defines us.”

— Matt, 52-year-old man with hemophilia A without factor VIII inhibitors, Washington

Watch Matt’s Story

HEMLIBRA® (emicizumab-kxwh) Events calendar icon

Attend HEMLIBRA events

Local and national hemophilia events can be great opportunities to connect with the community. You can hear directly from our ambassadors and learn more about HEMLIBRA. Find out about our upcoming in-person and virtual events here.

Like us on Facebook

Check out our Facebook page! Hear stories and connect with community members who have already given HEMLIBRA a shot.

HEMLIBRA® (emicizumab-kxwh) Clinical Education Manager Icon

Get Clinical Education Manager support

Our Hemophilia Community Clinical Education Managers, or CEMs, have years of nursing/clinical experience and can help answer questions about HEMLIBRA. Many of our CEMs have a personal connection to hemophilia A. Sign up for support.

CEMs do not provide medical advice.

HEMLIBRA Resources

More resources about HEMLIBRA are available for download.

Individual results may vary. Not all patients in the clinical trials had zero bleeds. See results for clinical trial patients with or without factor VIII inhibitors here.

The HEMLIBRA community members shown have been compensated for their participation.

When starting HEMLIBRA, a “loading dose” is taken once weekly for 4 weeks. After that, HEMLIBRA offers 3 regular dosing options: once weekly, once every 2 weeks, or once every 4 weeks. Talk to a doctor about dosing.

Our Clinical Education Managers Are Here to Help

Connect with a CEM that will tailor their support to your needs to help you navigate your HEMLIBRA journey.

What is HEMLIBRA?

HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with hemophilia A with or without factor VIII inhibitors.

What is the most important information I should know about HEMLIBRA?

HEMLIBRA increases the potential for your blood to clot. People who use activated prothrombin complex concentrate (aPCC; Feiba®) to treat breakthrough bleeds while taking HEMLIBRA may be at risk of serious side effects related to blood clots.

These serious side effects include: 

  • Thrombotic microangiopathy (TMA), a condition involving blood clots and injury to small blood  vessels that may cause harm to your kidneys, brain, and other organs 
  • Blood clots (thrombotic events), which may form in blood vessels in your arm, leg, lung, or head  

Talk to your doctor about the signs and symptoms of these serious side effects, which can include: 

  • Confusion
  • Stomach, chest, or back pain
  • Weakness
  • Nausea or vomiting
  • Swelling, pain, or redness
  • Feeling sick or faint
  • Decreased urination
  • Swelling of arms and legs
  • Yellowing of skin and eyes
  • Eye pain, swelling, or trouble seeing
  • Fast heart rate
  • Numbness in your face
  • Headache
  • Shortness of breath
  • Coughing up blood

If you experience any of these symptoms during or after treatment with HEMLIBRA, get medical help right away. 

Carefully follow your healthcare provider’s instructions regarding when to use an on-demand bypassing agent or factor VIII, and the dose and schedule to use for breakthrough bleed treatment. If aPCC (Feiba®) is needed, talk to your healthcare provider in case you feel you need more than 100 U/kg of aPCC (Feiba®) total. 

Your body may make antibodies against HEMLIBRA, which may stop HEMLIBRA from working properly. Contact your healthcare provider immediately if you notice that HEMLIBRA has stopped working for you (eg, increase in bleeds).

The most common side effects of HEMLIBRA include: injection site reactions (redness, tenderness, warmth, or itching at the site of injection), headache, and joint pain. These are not all of the possible side effects of HEMLIBRA. You can speak with your healthcare provider for more information.

What else should I know about HEMLIBRA?

See the detailed “Instructions for Use” that comes with your HEMLIBRA for information on how to prepare and inject a dose of HEMLIBRA, and how to properly throw away (dispose of) used needles and syringes.

  • Stop taking your prophylactic bypassing therapy the day before you start HEMLIBRA
  • You may continue taking your prophylactic factor VIII for the first week of HEMLIBRA

HEMLIBRA may interfere with laboratory tests that measure how well your blood is clotting and create an inaccurate result. Speak with your healthcare provider about how this may affect your care. 

Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Only use HEMLIBRA for the condition it was prescribed. Do not give HEMLIBRA to other people, even if they have the same symptoms that you have. It may harm them.

Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, or herbal supplements. Keep a list of them to show your healthcare provider and pharmacist.

Before using HEMLIBRA, tell your healthcare provider about all of your medical conditions, including if you are pregnant, plan to become pregnant, are breastfeeding, or plan to breastfeed.

Since HEMLIBRA was tested in males, there is no information on whether HEMLIBRA may impact your unborn baby or breast milk. Females who are able to become pregnant should use birth control during treatment.

Side effects may be reported to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at (888) 835-2555.

Please see Important Safety Information, including Serious Side Effects, as well as the HEMLIBRA full Prescribing Information and Medication Guide.