Connect with our B.E.N. P.A.L.S. B.E.N. can also put you in touch with B.E.N. P.A.L.S.® (Peer Advocates for Learning and Support) — HAE patients just like you.

Our B.E.N. P.A.L.S. are patients who have personal experience with hereditary angioedema (HAE) and Berinert.

They offer you encouragement, assistance, and advice by:

  • Helping you better understand and manage your Berinert therapy
  • Sharing their own experiences with Berinert and life with HAE
  • Answering nonmedical questions*

*Peer supporters are not healthcare professionals or medical experts. For medical questions, patients should contact their physicians

B.E.N. P.A.L.S. are patients who are Peer Advocates for Learning and Support, just like you and have personal experience with hereditary angioedema and Berinert.
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Topic

Meet the B.E.N. P.A.L.S.

Take a moment and listen to Berinert patients as they share their real-life stories on symptoms and seeking diagnosis, treatment for HAE, and how Berinert has helped them.

  • Stephanie
  • Machelle
  • Shari
  • Christie
  • HAE attacks before diagnosis
  • Impact of HAE on family
  • Fear of HAE attacks
  • Less worry about an HAE attack
  • B.E.N. P.A.L.S. support program
  • The long road to HAE diagnosis
  • Taking control of HAE
  • Treating attacks early
  • Berinert on-demand treatment
  • Living life with HAE
  • Managing HAE with daily responsibilites
  • Remembering first HAE attacks
  • Importance of being your own best health advocate
  • Self-administration and early treatment benefits
  • Exploring HAE treatment options
  • How Berinert on demand gives confidence to patients

Browse the Videos by Topic

Hear the same shared experiences organized by topic.

  • Early Symptoms
    and Diagnosis
  • On-Demand/
    Self-Infusion
  • Getting Started
    with Berinert
  • The Benefits
    of Berinert
  • B.E.N.
    the Berinert
    Expert Network
  • Choosing
    Berinert
  • Machelle
    • HAE Attacks before diagnosis
    • Impact of HAE on family
  • Shari
  • Christie
  • Stephanie
  • Shari
  • Christie
    • Self-administration and early treatment benefits
    • How Berinert on demand gives confidence to patients
  • Christie
  • Machelle
    • Less worry about an HAE attack
    • Fear of HAE attacks
  • Shari
    • Treating attacks early
    • Berinert on-demand treatment
    • Living life with HAE
  • Machelle
  • Christie

Save on Co-Pays: The Berinert Co-Pay BENefit™ may cover up to $12,000 of your eligible out-of-pocket expenses per year.

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Resources

Helpful resources, videos, links, and downloads provided to patients using Berinert HAE on-demand treatment.

Home Support Services Meet the B.E.N. P.A.L.S.
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Important Safety Information

Berinert®, C1 Esterase Inhibitor (Human), is used in adults and children to treat swelling and/or painful attacks of hereditary angioedema (HAE) affecting the abdomen, face or throat. The safety and efficacy of Berinert in preventing HAE attacks have not been established.

Do not use Berinert if you have experienced life-threatening allergic reactions or severe hypersensitivity to the product. Inform your healthcare provider of all medications you are taking and of any medical conditions, especially any history of blood-clotting problems.

Blood clots have occurred in patients receiving Berinert. Tell your healthcare provider if you have a history of heart or blood vessel disease, stroke, or blood clots, or if you have thick blood, an indwelling catheter/access device in a vein, or have been immobile for some time. Certain medications, such as birth control pills, may also increase your risk of clotting problems.

Report to your physician or an emergency room any signs and symptoms of a blood clot, including pain and/or swelling or discoloration of an arm or leg, with warmth over affected area; unexplained shortness of breath; chest pain or discomfort that worsens on deep breathing; rapid pulse; and numbness or weakness on one side of the body.

In addition, report immediately any signs or symptoms of allergic reactions to Berinert, including hives, chest tightness, wheezing, difficulty breathing, turning blue, faintness, facial swelling and fast heartbeat.

If you have been trained to self-administer Berinert, immediately prepare the prescribed dose at the first symptoms of an attack. Seek immediate medical attention and do not begin to self-adminster if an HAE attack has progressed to a point where you will be unable to prepare or administer a dose of Berinert.

If you self-administer to treat a laryngeal attack, immediately seek medical attention afterward. If you self-administer for an abdominal attack, inform your physician so that other possible causes can be ruled out.

Call your doctor right away if swelling is not controlled after use of Berinert.

In clinical studies, the most serious adverse reaction reported in subjects who received Berinert was an increased severity of the pain associated with HAE. In the placebo-controlled clinical trial, the most common adverse reaction reported more often among subjects who received Berinert than those receiving placebo was dysgeusia (a bad taste in mouth). Tell your healthcare provider about any side effect that bothers you or does not go away.

Because Berinert is made from human blood, the risk that it may transmit infectious agents, including viruses and theoretically, the agents of Creutzfeldt-Jakob Disease (CJD) and its variant form (vCJD), cannot be completely eliminated.

Please see full prescribing information for Berinert, including the patient product information.

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.

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