HAEi is the International Patient Organization for C1-Inhibitor Deficiencies

Our organization is a global non-profit network of patient associations and we are dedicated to raising awareness of C1-inhibitor deficiencies around the world.

We aim to improve time to diagnosis and facilitate access to and reimbursement of life saving HAE therapies.

Suffering from HAE? You are not alone!

Members of the HAEi family
Member Countries

Read the latest news from HAEi

1Oct, 2015

Dyax Corp. Receives Positive Opinion in the European Union

The European Medicines Agency (EMA) Committee for Orphan Medicinal Products (COMP) has […]

30Sep, 2015

Sanj K. Patel Appointed to BioCryst’s Board of Directors

BioCryst Pharmaceuticals, Inc. has elected Sanj K. Patel to the Company’s Board […]

16Sep, 2015

Rare disorders process yields first funding decision

People with HAE are the first to benefit from the […]

>> See list of all news here

Check out HAEi events around the world

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– Language: English
Denver Marriott Tech Center
Denver CO United States

Oct 9, 2015 - Oct 11, 2015 at 10:00 am

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– Language: English
COEX Convention and Exhibition Center
Seoul South Korea

Oct 14, 2015 - Oct 17, 2015 at 10:00 am

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– Language: Danish, Norwegian, Swedish
Sinatur Hotel Storebælt
Nyborg Denmark

Nov 6, 2015 - Nov 8, 2015 at 6:00 pm

>> See list of all events here

Read the newsletters sent from HAEi to our subscribers

10Sep, 2015
10Jul, 2015

HAEi Newsletter July 2015

16May, 2015

HAEi Newsletter May 2015

2Mar, 2015
>> See list of all newsletters here
Stay Tuned

Be the first to know about HAE news, treatments, events and related topics

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HAEi on social media

You can follow HAEi on a number of social media platforms where we will keep you updated on the latest news regarding HAE.

Share your story, your questions or your concerns and get inspiration and support from fellow patients and others with an interest in HAE.Join HAEi on Facebook
Follow @HAEiTwit on Twitter and join our discussions about HAE topics.
Use #HAEi, #hereditaryangioedema or #haeday when tweeting.Follow HAEi on Twitter
For more corporate news, follow HAEi on LinkedIn. Make sure to be the first to get HAE related news posted on our LinkedIn profile.Connect and stay tuned on LinkedIn
Each 16 May the global hae day :-) raises awareness of HAE among the general public, health authorities, and the medical community.Support us by posting your smile
Find HAE “Points of Interest” relevant to you



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 %

Download the full “State of Management of HAE in Europe” report and get all the usefull insights

Take me to all the useful resources
Read the stories of HAE patients from around the world

HAE patients from all corners of the world share their stories, inspiring other patients and proving that it is in fact possible to lead a close to normal life with HAE.

Reach out to HAEi

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, send us a message, if you have anything you want to share with us.

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