Patient stories

In patients own words

Everyone who has HAE knows that its symptoms are astonishingly individual.  No two people (even within the same family) share the exact same triggers, severity of attacks or even the same journey to diagnosis. Every HAE story is unique and valuable.

The patient stories profiled here tell of struggles and triumphs. One may sound very familiar to you and one may reveal aspects of living with HAE that you have never encountered yourself.
Additional stories will be profiled as they are received and archived so that you can view them again at any time.

We invite you to read all of the compelling HAE journeys below and to learn how to submit your own Patient Story.

Jump to our sections with comprehensive content and learn more


What is HAE

Get to know the disease: symptoms, diagnose, treatments and more

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For healthcare providers. Knowledge, CME-programs and more

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Living with HAE

Care takers and givers: HAE will affect your life - But you can still be in control.

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Our area with a lot of usefull information

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2016 Core Program Support Provided by


For HAE Emergency:

(866) 841-4232

For non-emergency questions
– contact a Patient Advocate:

(866) 798-5598

Take action

– and make a difference

Become an Advocate for HAEA

Call our Patient Advocates

Join the HAEA Café

Get a referral to an HAE Physician

Have your family checked for HAE

Join our family – become a member of HAEA

Join our group on Social Media

Participate in an event

Participate in our Scientific Registry

Shop for merchandise


Share your HAE story