Who we are

Welcome to HAE International

HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.

We are a group of compassionate HAE patients and care givers who make it our life’s work to raise awareness of hereditary angioedema (HAE), improve time to diagnosis, and fiercely advocate for approval and reimbursement of lifesaving therapies to everyone suffering from HAE.

We provide our member organizations with specially designed tools and technical assistance that promote disease education and support activities addressing the unique needs of HAE patients and their families.

HAEi is company and product neutral and enthusiastically supports drug discovery research aimed at the next generation of HAE therapies. Our great success in supporting clinical trials has resulted in a variety of approved therapeutic options. We work closely with expert physicians to continuously encourage a tailored, patient-focused approach to the use of available therapeutic options.


To lead a global network of member organizations and provide specially designed tools, resources, educational programs, and hands-on assistance to empower awareness, accelerate diagnosis, and champion access to life-saving HAE therapies.


To unite and strengthen the HAE global community, achieve a world free of barriers where effective treatments are accessible everywhere, and provide a higher quality of life for people with HAE.


To fulfill the highest priority needs of our member organizations with an extraordinary level of dedication, effectiveness, and accountability, guided by compassion, kindness, and inclusivity.

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News & Events

See what is happening in the world of HAE

HAEi events around the world

>> Click here to see a list of all the events

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Oct 3, 2024 - Oct 6, 2024 at All Day

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Oct 4, 2024 - Oct 5, 2024 at All Day

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Dec 12, 2024 at 12:00 am

Patient stories

Read the stories of HAE patients from around the world

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HAEi around the world

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The flags above represent the countries with a national HAE organization. However, presently we know of HAE points on contact – mostly HAE knowledgeable physicians and hospitals – in a number of other countries around the globe. Please click on your region to learn more:

AfricaAustralia & OceaniaCentra AsiaCentral America & CaribbeanEast & Southeast AsiaEuropeMiddle EastNorth AmericaSouth AmericaSouth Asia

Impact of HAE

Missed opportunities due to HAE

It’s important to get the right treatment to get the most out of life

Patients report that HAE has hindered their education and work opportunities.

Getting the right treatment will allow you to live a normal life without missing out on education and job opportunities.

Percentage of patients reporting severe impact from HAE on education and career:

Impacted career advancement 57%
Unable to consider certain jobs 69%
Impacted career choices 63%
Did not go as far in school as desired 40%


The HAEi resources are here for you

Our organization is a global non-profit network of patient associations and we are dedicated to raising awareness of hereditary angioedema (HAE) around the world.

We strive to improve time to diagnosis and facilitate access to and reimbursement of life-saving HAE therapies, which will enable lifelong health for all patients – no matter where they live.

Prevalence of HAE is still unknown. However, we expect the global prevalence of HAE to be approximately 1 in 30,000, which means that around a quarter million people worldwide suffer from this rare and potentially life-threatening deficiency.

Visit the Resources tab in the navigation to see more

HAEi on social media

You can follow HAEi on a number of social media platforms

Share your story, your questions or your concerns and get inspiration and support from fellow patients and others with an interest in HAE.

Open page for everybody interested in HAE globally.

HAEi on Instagram

HAEi’s open profile on Instagram is for everybody interested in HAEi and HAE in general.

HAEi on X (Twitter)

Follow @haeday on Twitter and join our discussions about HAE topics. Use #HAEi, #hereditaryangioedema or #haeday when tweeting.

For more corporate news, follow HAEi on LinkedIn. Make sure to be the first to get HAE related news posted on our LinkedIn profile.

HAEi Youngsters on Instagram

HAEi Youngsters have their own profile on Instagram for communication in the HAEi Youngsters community.

HAEi’s Facebook page

HAEi on Instagram

HAEi on X (Twitter)

HAEi on LinkedIn

HAEi Youngsters’ Instagram

HAEi’s Facebook group for patients and care givers

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Reach out to HAEi

Your experience and your story can help us.

At HAEi we are constantly focusing on how to improve the awareness of HAE, and how to create a better environment for timely diagnosis and access to therapies. Your experience and your story can help us. Reach out to us!

Say hello!
Your personal story, an invitation to your community’s event, local or national news, feedback, questions …

All that and much more is always welcome in HAEi’s mailbox.

So please click here, send us a message, if you have anything you want to share with us.