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