HAEA - a Patient Advocacy Group for HAE Sufferers

Living with a rare disorder doesn’t need to feel lonely. Numerous HAE patients and families across the country are sharing information, stories and support. We can add a pin on the map for you…

Join the US Hereditary Angioedema Association community today.
0903 enrolled & counting…

Our Scientific Registry allows researchers to better study HAE, working towards finding cures and improving patient care.

Enroll in the Scientific Registry

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The US HAEA also provides support for local small group meetings.
Setting up a Community Support Luncheon is as easy as making a phone call!

Click here for more information.

What is HAE?

Hereditary Angioedema, or HAE, is a very rare and potentially life-threatening genetic disease that occurs in about 1 in 10,000 to 1 in 50,000 people. HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, genitals, face, and airway or throat. In addition, patients often have bouts of excruciating abdominal pain, nausea and vomiting that is caused by swelling in the intestinal wall. Learn more>

Who is US HAEA?

We are a non-profit HAE patient organization. Learn more>

HAE News

Jan 03, 2012
CSL Behring Receives FDA Approval of Expanded Label on Berinert® for Self-administration and Treatment of Acute Laryngeal Attacks of Hereditary Angioedema
Read more

US HAEA Patient Services

Learn how we can help! Find a Patient Services Representative in your region.

Latest Patient Story

Jan 2012

My name is Chris. I am 27 years old. My first attack was when I was 12 yrs old and it was a stomach attack. It peaked while in church services at my catholic school. I woke up in the nurse’s office about an hour later still in crazy pain. I always knew my dad battled [...]

Read Chris's story