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Welcome.

We’re glad you’re here.

HAEVN is a resource created in partnership with people with hereditary angioedema (HAE) offering support, connection, and inspiration. Here, you can explore emotional health, discover stories from other community members, share your perspective, and find tools and resources that can make life a little easier.

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Power in numbers

Exciting things are happening in the HAE community.

People are finding new ways to connect and advocate for their well-being, including in this HAEVN community.

As more people come together to explore a different reality, there’s a fresh spotlight on “life with HAE,” illuminating the importance of measuring not just the number of angioedema attacks, but also HAE’s impact on work, school, connections, and emotional health.

The conversation is shifting to ALL the numbers that matter.
Which ones are most important to you?

EXPLORE
Start counting the good stuff

Date nights

5 Date Nights

Friends visited

4 Friends Visited

Workouts

8 Workouts

BBQs

2 Barbeques

Trips planned

3 Trips Planned
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LISTEN TO STORIES FROM THE COMMUNITY

HAE community perspectives

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“I have HAE. HAE does not have me.”

— Person living with HAE

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“I had extreme guilt about how my illness affected my children.”

— Person living with HAE

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“I think there’s a lot of opportunity in looking at mental health, anxiety...the whole story.”

— Person living with HAE

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“We spend a lot of time documenting our condition, only to be continually questioned about it.”

— Person living with HAE

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“We can all make small changes on our own, but strength lies in the numbers, and together we can have a big impact.”

— Person living with HAE

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“I’ve been misunderstood by my work colleagues and managers.”

— Person living with HAE

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“I’ve spent time educating my local ER on HAE and this has helped enormously.”

— Person living with HAE

HEAR MORE
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Find support

Explore downloadable resources, advocacy organizations, and opportunities to gather.
 

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Stay connected

Sign up for information about HAE, including resources to help support daily life, tips from the community, news on treatment options, and invitations to share your perspective.

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Reach out to us if you'd like to share a photo, quote, or video about your experience with HAE.

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