Connect With Others

“Relying on the love and support of people who understand HAE helps me feel stronger and more at  peace with my condition.”

Lesa — Diagnosed with HAE in 1980

Discover the HAE community

Whether you live with hereditary angioedema (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.

Hereditary Angioedema Association

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.

Sign up at

Hereditary angioedema community

Join DiscoverHAE on Facebook

Get involved in the conversation happening on DiscoverHAE's Facebook group.

Join now

Shire wants to hear from you. Share your story.

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.

Sign up here

National Organization for Rare Disorders

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.

Learn more at

National and global HAE organizations

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.

American Academy of Allergy, Asthma and Immunology (AAAAI)

American College of Allergy, Asthma & Immunology (ACAAI)

World Allergy Organization (WAO)

HAE International (HAEi)

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