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hemgenix-logo-bg mobile-menu-bg HEMGENIX® (etranacogene dezaparvovec-drlb)

Support for every step

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Dedicated experts offering support

Available to you through each step of treatment and beyond

Starting a new treatment for hemophilia B can be a big adjustment. That is why CSL Behring has created HEMGENIX Connect as a suite of services to help you throughout your journey. HEMGENIX Connect is there for you from the first steps toward treatment through post-treatment monitoring of progress.

After speaking with your doctor about treatment with HEMGENIX, enroll to start taking advantage of the support HEMGENIX Connect offers. 

Enroll in HEMGENIX Connect today!

or call 1-833-436-0021
Monday through Friday, 8 AM-8 PM ET.

Elevate your expectations for support with HEMGENIX Connect, including:

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Your dedicated team, including a Patient Resource Navigator and a CSL Case Manager

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Copay support for eligible people with commercial insurance*

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Determination of eligibility for financial assistance programs

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Insurance assessment to investigate coverage and explain your benefits

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Ongoing commitment to providing additional support and resources

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Logistics and travel support

*See terms and conditions.

Early enrollment in HEMGENIX Connect will allow us to help you from the start! This enables your Patient Resource Navigator to provide education on gene therapy and your CSL Case Manager to investigate reimbursement support as early as possible.

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HEMGENIX Connect Brochure

Provides additional information on the HEMGENIX Connect patient support program and lets you know what to expect during the treatment journey


Patient Resource Navigator

Gene therapy for hemophilia B is an exciting innovation that could change how you think about living with hemophilia B. When you join HEMGENIX Connect, your dedicated Patient Resource Navigator will be your point of contact for educational resources and comprehensive support throughout every step of treatment with HEMGENIX.

Your Patient Resource Navigator will:

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Provide education on gene therapy and how it works

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Provide support and guidance on HEMGENIX treatment steps

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Work hand in hand with your CSL Case Manager to help you learn about all possible sources of financial assistance and support

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Your Patient Resource Navigator will not provide personal medical advice. Please refer all questions about your individual health needs to your treating physician.

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CSL Case Manager

Your dedicated team also includes a CSL Case Manager who will work directly with your Patient Resource Navigator.

Your CSL Case Manager can help:

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Review your insurance, investigate coverage for treatment, and explain your benefits

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Determine your eligibility for financial assistance programs

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Identify the closest in-network administration center

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Identify if copay assistance may be able to cover out-of-pocket expenses

Looking for a center that can infuse HEMGENIX?

Enter your ZIP code, city, or state to find the closest HEMGENIX administration center.

Discover other people who have experience with hemophilia B

Advocacy groups can help educate, connect, and empower people with hemophilia B and their families. Check out these national organizations for continued learning and support:

Explore gene therapy with HEMGENIX

Whether you have hemophilia B, are caring for someone with hemophilia B, or just want to learn more about HEMGENIX, we want to provide you with the information you need.

Sign up today

Downloadable support tools and resources are available

Redefine how you live with hemophilia B

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HEMGENIX®, etranacogene dezaparvovec-drlb, is a one-time gene therapy for the treatment of adults with hemophilia B who:

  • Currently use Factor IX prophylaxis therapy, or
  • Have current or historical life-threatening bleeding, or
  • Have repeated, serious spontaneous bleeding episodes.

HEMGENIX is administered as a single intravenous infusion and can be administered only once.

What medical testing can I expect to be given before and after administration of HEMGENIX?

To determine your eligibility to receive HEMGENIX, you will be tested for Factor IX inhibitors. If this test result is positive, a retest will be performed 2 weeks later. If both tests are positive for Factor IX inhibitors, your doctor will not administer HEMGENIX to you. If, after administration of HEMGENIX, increased Factor IX activity is not achieved, or bleeding is not controlled, a post-dose test for Factor IX inhibitors will be performed.

HEMGENIX may lead to elevations of liver enzymes in the blood; therefore, ultrasound and other testing will be performed to check on liver health before HEMGENIX can be administered. Following administration of HEMGENIX, your doctor will monitor your liver enzyme levels weekly for at least 3 months. If you have preexisting risk factors for liver cancer, regular liver health testing will continue for 5 years post-administration. Treatment for elevated liver enzymes could include corticosteroids.

What were the most common side effects of HEMGENIX in clinical trials?

In clinical trials for HEMGENIX, the most common side effects reported in more than 5% of patients were liver enzyme elevations, headache, elevated levels of a certain blood enzyme, flu-like symptoms, infusion-related reactions, fatigue, nausea, and feeling unwell. These are not the only side effects possible. Tell your healthcare provider about any side effect you may experience.

What should I watch for during infusion with HEMGENIX?

Your doctor will monitor you for infusion-related reactions during administration of HEMGENIX, as well as for at least 3 hours after the infusion is complete. Symptoms may include chest tightness, headaches, abdominal pain, lightheadedness, flu-like symptoms, shivering, flushing, rash, and elevated blood pressure. If an infusion-related reaction occurs, the doctor may slow or stop the HEMGENIX infusion, resuming at a lower infusion rate once symptoms resolve.

What should I avoid after receiving HEMGENIX?

Small amounts of HEMGENIX may be present in your blood, semen, and other excreted/secreted materials, and it is not known how long this continues. You should not donate blood, organs, tissues, or cells for transplantation after receiving HEMGENIX.

Please see full prescribing information for HEMGENIX.

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

You can also report side effects to CSL Behring’s Pharmacovigilance Department at 1-866-915-6958.