Get involved with the hereditary angioedema (HAE) community
HAE is rare, but you are not alone. Whether you live with HAE or you love someone with the condition, talking with other people who understand the challenges you face can be incredibly helpful. Connecting with people in the HAE community can help you discover new resources, build a support network and find encouragement when you need it.
Join DiscoverHAE on Facebook
Get involved in the conversation happening on DiscoverHAE’s Facebook group.
Attend an HAE event
Educational HAE events are held across the United States. They give you a way to learn from an HAE specialist and meet other people with HAE. Find out if an event is coming to an area near you.
Become a member of the US Hereditary Angioedema Association (HAEA)
The HAEA is a nonprofit organization created by people with HAE for people with HAE, their family members and the doctors who help them.
Share your story
Do you have HAE or do you care for someone who has been diagnosed? Your story could help someone else navigate his or her own experience.
Stay in touch
Sign up to receive updates, info and resources from DiscoverHAE. We’ll send them straight to your inbox as they become available.
Follow the National Organization for Rare Disorders (NORD)
NORD is an organization dedicated to advocating for people with rare diseases. You can follow them on Facebook and Twitter.
Relying on the love and support of people who understand HAE helps me feel stronger and more at peace with my condition.
Learn about national and global organizations
There are several organizations that provide helpful information about HAE and other conditions. Explore patient resources, sign up for their newsletters, and see how you can support them in their mission to improve the quality of patient care.