Novo Nordisk

This advocate and mom of two has a long history with hemophilia.

Used to treat, prevent, or reduce the number of bleeding episodes in people with hemophilia B.
See full indication below.

Hello [Name]. My name is Emili, and like you, I’m part of the hemophilia B community.

I’m a mom and advocate working to help our kids and community flourish.

See My Story

Snapshot of Emili. She is a hemophilia B advocate. Emili is sitting on a box with her legs crossed, looking at us.

Scroll on and learn about Emili’s experience.

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.

Please click here or scroll below for additional Important Safety Information.

My hemophilia story began with my dad and continues with my two children. My daughter Gensen is a symptomatic carrier and my son Xander has mild hemophilia B.

Throughout three generations, there has been so much change! I’ve benefited first-hand from the education and support that’s now part of our community.

I first learned about Rebinyn^® at a hemophilia B symposium. A family, similar to ours, shared their experience with Rebinyn^® and I knew I needed to learn more for Xander’s sake.

After a lot of research and discussion with our treatment center, we came to the conclusion that Rebinyn^® was the right choice because:

		Rebinyn^® keeps Xander’s factor levels high for longer. Children up to the age of 6 had a 70 hour half-life with 15% FIX levels on day 7.^a For me, that means I don’t start worrying 12 hours after an infusion because I know Xander is protected for longer.
		Rebinyn^® reduces the amount of factor needed. Compared with standard half-life treatments, some adolescents and adults use up to 80% less FIX.^b
		Rebinyn^® and Novo Nordisk provide educational support and resources. Our Novo Nordisk Hemophilia Community Liaison has been so helpful. They talk about Rebinyn^®, share resources and information, and listen—which is sometimes all we need.

If you’d like to learn more about my family’s experience with Rebinyn^® or my experience as a mother and symptomatic carrier, watch my video on the Rebinyn^® website. And if you see me at a hemophilia event, come say hello!

^aMean steady-state pre-dose trough levels and post-dose peak levels across the clinical trials for all previously treated children receiving Rebinyn^® 40 IU/kg once weekly. Based on an analysis using a 1-stage assay of previously treated children aged 0 to 12 years old (N=25). Children were stratified into 2 groups: ≤6 years old (n=12) and 7 to 12 years old (n=13). All patients received a fixed dose of 40 IU/kg of Rebinyn^® intravenously once weekly for prophylaxis.

^bIn a phase 3 study, the efficacy of Rebinyn^® in adults/adolescents was evaluated. The on-demand arm included 15 patients; one patient had no bleeds, the other 14 patients received Rebinyn^® 40 IU/kg as single dose for the treatment of bleeds. Patients received on-demand treatment for 28 weeks. 7 patients controlled all bleeds (62 bleeds) with a single 40 IU/kg dose of Rebinyn^®. The remaining 7 patients (81 bleeds) required ≥2 doses to control at least one of their bleeds. Of those 7, 4 patients who were previously treated with multiple high doses (2-3 doses of 60 IU/kg-80 IU/kg) were able to control 71% of their bleeds with a single dose and used 58%-80% less FIX while using Rebinyn^® 40 IU/kg. This was reported in one patient.

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 (Cont’d)

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.

All the best,

Emili

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