HAE patient Leah Weisbecker)

Hereditary Angioedema

Hereditary Angioedema

What is Hereditary Angioedema?

Hereditary Angioedema (HAE) is a rare hereditary disease that can cause attacks of swelling, and often pain, in specific parts of the body including the stomach, hands, feet, arms, legs, genitals, throat, and face. Depending on the severity of the disease, some people will have many attacks each month, while others will go months without an attack.

People with HAE are missing or have low levels of a protein called C1 esterase inhibitor (C1-INH); in some cases, the C1-INH levels are sufficient but the protein does not function properly. The defect with C1-INH lies within a person's genetic code, which is why HAE runs in families.

Types of HAE
Hereditary Angioedema is classified into three types based on what problem the genetic defect causes.

Type I - Low levels of C1-INH in the body; this is the most common form of HAE.
Type II - Normal levels of C1-INH, but it does not function normally; this accounts for ~15% of people with HAE.
Type III - Normal levels of C1-INH and it functions normally; this is extremely rare and not well understood.


  • 1 / 40,000 - 50,000

    people affected with HAE

  • 50%

    chance of someone with HAE passing it on to a child

  • 250+

    more than 250 different genetic mutations causing symptoms of HAE have been identified to date

Understanding HAE

What are the symptoms of HAE?

Answer 8 quick questions to see if your symptoms fit the profile of HAE.

What are the warning signs of an HAE attack?

HAE attacks can occur suddenly and without warning. However, many people notice symptoms at the very early stages of an attack, including sudden mood change, irritability, extreme fatigue, nausea, rash or tingling.

What are the treatment options for HAE?

If you or a family member has HAE, become an advocate for effective treatment. Learn as much as you can about preventive therapies and on-demand treatments.

Resources for you

allabouthae.com Provides HAE patients and their families with tips on recognizing, treating and managing HAE and offers personalized, interactive tools. Visit Website
All About HAE Facebook Page
Provides HAE patients and their families with tips on recognizing, treating and managing HAE and offers personalized, interactive tools. Visit Website
HAEGARDA Facebook Page Provides HAE patients and their families with information on HAEGARDA, patient stories and support programs. Visit Website
HAEGARDA YouTube Channel Shows videos about people living with HAE. Visit Channel
HAE Doctor Discussion Guide Printable guide to help you discuss your symptoms and attacks with your doctor. Guide
haei.org International patient organization dedicated to raising awareness of HAE around the world by joining the efforts and experience of the global HAE community to achieve optimal standards of care and treatment for all patients affected by HAE. Visit Website

The US HAE Association website provides HAE patients and their families with a support network and a wide range of services, including physician referrals and personalized patient support.

Visit Website
 BERINERT.com Product website Visit Website
 HAEGARDA.com Product website Visit Website

Treatments Available

Availability of treatments may vary from country to country. Please be sure to visit your local CSLBehring.com site for further information.

 HAEGARDA® | C1 Esterase Inhibitor Subcutaneous (Human)

US Prescribing Information

US Important Safety Information(Selected) 

Do not use HAEGARDA if you have previously experienced life-threatening immediate hypersensitivity reactions, such as shock, to HAEGARDA or other C1-INH products. Immediately report any symptoms of allergic reactions to HAEGARDA, including hives, chest tightness, wheezing, difficulty breathing, turning blue, faintness, facial swelling and fast heartbeat.

In clinical studies, the most common side effects reported with HAEGARDA were injection-site reactions (pain, redness, swelling); hypersensitivity (itching and rash), dizziness, and nasal symptoms, including stuffy or runny nose and sneezing. These are not the only side effects possible with HAEGARDA. Tell your healthcare provider about any side effect that bothers you or does not go away.

Full US Important Safety Information

 Berinert® | C1 Esterase Inhibitor (Human) Intravenous

US Prescribing Information

US Important Safety Information (Selected)

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

Tell your healthcare provider about any side effect that bothers you or does not go away.

 Full US Important Safety Information

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