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LISTEN. LEARN. FIND STRENGTH.

Communities grow stronger with every experience shared. You may find inspiration in these personal stories from others living with hemophilia B.

Emili hemophilia b caregiver

> > Community Stories

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LISTEN. LEARN. FIND STRENGTH.

Communities grow stronger with every experience shared. You may find inspiration in these personal stories from others living with hemophilia B.

Emili hemophilia b caregiver

TASTING THE GOOD LIFE

Diagnosed at birth, Timothy has a long history of managing his severe hemophilia B. But there’s a lot more to Timothy’s story–he’s a father, a travel enthusiast, an accomplished tailor, and an unabashed foodie.

Timothy realized he needed a treatment that could help him keep up with his lifestyle. After researching his options, he made the switch to the extended half-life treatment, Rebinyn®. Now, he’s grateful for this opportunity to give back to the hemophilia B community as an advocate.

Please see full Prescribing Information.
Please see Important Safety Information.

BECOMING AN ADVOCATE

Although he was diagnosed with hemophilia B at age 13, Abdiel wasn’t really aware of the need for hemophilia education and advocacy until college. That’s when he started participating in community events that empower others with information, resources, and a connection to the hemophilia community network.

Please see full Prescribing Information.
Please see Important Safety Information.

BECOMING AN ADVOCATE

Although he was diagnosed with hemophilia B at age 13, Abdiel wasn’t really aware of the need for hemophilia education and advocacy until college. That’s when he started participating in community events that empower others with information, resources, and a connection to the hemophilia community network.

Please see full Prescribing Information.
Please see Important Safety Information.

STARTING A NEW CHAPTER

Being a mom and caregiver, Emili knows that navigating life with hemophilia B can have its own challenges and rewards. That’s why she’s driven to learn everything she can help to keep her son, Xander, as healthy as possible.

After doing her homework on factor products, Emili decided the flexibility and extended half-life of Rebinyn® was right for her son. She’s excited to take on her role as ambassador to support others and motivate them to become involved in their own communities.

Please see full Prescribing Information.
Please see Important Safety Information.

HOW IT EXTENDS HALF-LIFE

Rebinyn® stays in your body longer, to protect you longer.

rebinyn extended half life

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RESOURCES FOR YOU

These materials can help you stay educated on bleeding disorders.

bleeding disorder resources

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Selected Important Safety Information

What is the most important information I need to know about Rebinyn®?

  • Do not attempt to do an infusion yourself unless you have been taught how by your healthcare provider or hemophilia treatment center. Carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing Rebinyn®.

Who should not use Rebinyn®?
Do not use Rebinyn® if you:

  • are allergic to Factor IX or any of the other ingredients of Rebinyn®.
  • are allergic to hamster proteins.
     

Indications and Usage

What is Rebinyn®, Coagulation Factor IX (Recombinant), GlycoPEGylated?
Rebinyn® is an injectable medicine used to replace clotting Factor IX that is missing in patients with hemophilia B. Rebinyn® is used to treat, prevent, or reduce the frequency (number) of bleeding episodes in people with hemophilia B. Your healthcare provider may give you Rebinyn® when you have surgery. Rebinyn® is not used for immune tolerance therapy.

Important Safety Information

What is the most important information I need to know about Rebinyn®?

  • Do not attempt to do an infusion yourself unless you have been taught how by your healthcare provider or hemophilia treatment center. Carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing Rebinyn®.

Who should not use Rebinyn®?
Do not use Rebinyn® if you:

  • are allergic to Factor IX or any of the other ingredients of Rebinyn®.
  • are allergic to hamster proteins.

What should I tell my healthcare provider before using Rebinyn®?
Tell your healthcare provider if you:

  • have or have had any medical conditions.
  • take any medicines, including non-prescription medicines and dietary supplements.
  • are nursing, pregnant, or plan to become pregnant.
  • have been told you have inhibitors to Factor IX.

How should I use Rebinyn®?

  • Rebinyn® is given as an infusion into the vein.
  • Call your healthcare provider right away if your bleeding does not stop after taking Rebinyn®.
  • Do not stop using Rebinyn® without consulting your healthcare provider.

What are the possible side effects of Rebinyn®?

  • Common side effects include infusion site reaction (bruising, bleeding, swelling, pain, or redness), itching, and rash.
  • Your body can also make antibodies called “inhibitors” against Factor IX, including Rebinyn®, which may stop Rebinyn® from working properly. Your healthcare provider may need to test your blood for inhibitors from time to time.
  • Call your healthcare provider right away or get emergency treatment right away if you get, for example, any of the following signs of an allergic reaction: hives, chest tightness, wheezing, difficulty breathing, and/or swelling of the face.
  • You may be at an increased risk of forming blood clots in your body, especially if you have risk factors for developing blood clots. Call your healthcare provider if you have chest pain, difficulty breathing, leg tenderness, or swelling.
  • Animals given repeat doses of Rebinyn® showed Polyethylene Glycol (PEG) in certain cells in the brain. The potential human implications of these animal tests are unknown.
     

Please click here for Prescribing Information.

Rebinyn® is a prescription medication.

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.