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:

If you are having an HAE medical emergency, please hang up and dial 911 immediately. For non- emergencies please contact your HAE treating doctor.

For non-emergency questions
– contact a Patient Advocate:

(866) 798-5598

Take action

– and make a difference

  Join our family – become a member of HAEA

  Call our Patient Advocates

  Join the HAEA Café

  Get a referral to an HAE Physician

  Become an Advocate for HAEA

  Have your family checked for HAE

  Join our group on Social Media

  Participate in an event

Participate in our Scientific Registry

  Shop for merchandise


  Share your HAE story