Discover tools you can start using now
Living with a rare disease can sometimes mean that 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 hereditary angioedema (HAE).
Doctor Discussion Guide
If you think there's a chance you could have HAE, 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 whether you should be tested for HAE.
Digital Awareness Kit
The Digital Awareness Kit contains a variety of helpful downloadable resources that can help you understand HAE and explain it to your peers, family members and other people who are unfamiliar with the condition.
Emergency Medical ID 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.