Patient Stories
Share Your HAE Story
In Your Own Words

We are delighted that you would like to share your HAE journey. Every HAE story is unique and valuable.

Please include these basic facts:

  • Name, age and hometown so that HAEA can identify you.
You may wish to include this information about your HAE journey in your story:
  • How old were you when you found out you had HAE?
  • How were you diagnosed with HAE?
  • What are some of the challenges you encountered while living with HAE?
  • How has your life changed now that you have medication for your HAE?

  • All submitters will be asked to review and approve their edited story before it goes “live” on the web site. A simple email providing consent is sufficient.
  • You may include a photo (headshot only) of yourself to accompany your story.
  • All stories, photos, and signed forms will be permanently archived with the US HAEA.
  • Your story must be 500 words or less.

You may also want to mention any role played by the US HAEA in your story. Please submit your story to Please be aware that not every story may be published and stories may be edited to fit the space provided. If you have any questions, please email us at Thank you for sharing your personal HAE story!