HAE resources

Liz
Diagnosed with
HAE in 2013

Discover tools for living with hereditary angioedema (HAE)

Living with a rare disease can sometimes mean you don’t have easy access to the information, resources and support you need. That’s why we’re creating a growing list of helpful material that can support you in your journey with HAE.

Doctor discussion guide

Doctor Discussion Guide

If you think there’s a chance you could have HAE or you want to discuss your current management plan with your doctor, fill out this discussion guide and take it with you to your next doctor’s appointment. It can help you and your doctor better understand your symptoms and determine the best course of action.

Start your guide

HAE family brochure

HAE family brochure

This helpful brochure can help you explain the hereditary aspect of HAE and how important it is for family members to get screened.

Download now

HAE family health tree worksheet

HAE family health tree worksheet

Use this resource to gather vital information about your family’s history of HAE.

Download now

Frequently asked questions

Frequently asked questions

Browse through this quick informational tool that answers common questions about HAE and helps spread awareness of the condition. Read it online or keep a copy to read later.

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Emergency medical card

Emergency medical card

If you live with HAE, planning for an emergency can help you feel prepared. Ask your HAE-treating physician to fill out your emergency medical card with your specific treatment plan and his/her emergency contact information.

Download now

Medical letter

Physician letter

Consider asking your doctor to fill in this letter outlining your condition and treatment plan. It can come in handy with everything from going through TSA when you're traveling to helping explain your situation to someone who's not familiar with the condition.

Download a physician letter to carry with you

Advance HAE app from the HAEA

Advance HAE app from the HAEA

The US Hereditary Angioedema Association (HAEA) has created an app that makes it easy to keep your own personal record of life with HAE. The app stores all of your information on your HAE attacks and your HAE therapy/therapies. The app also allows you to create personalized, user-friendly graphs of the data you enter.

Learn more now

Help finding a doctor

Help finding a doctor

Few doctors are familiar with diagnosing and helping people manage HAE. If you need help finding a doctor who knows about HAE, the HAEA provides a simple online tool that can help.

Use the physician finder

Stay updated

Stay updated

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Learn about types of treatment

Learn about types of treatment

There are two main types of treatment for HAE: preventive and on-demand. Start learning about the options and ask your doctor if they should be included in your HAE management plan.

Explore HAE treatment types