HAEi is the international umbrella organization for the world’s Hereditary Angioedema (HAE) patient groups.

HAEi is dedicated to raising awareness of C1-inhibitor deficiencies 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.

Suffering from HAE? You are not alone!

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Read the latest news from HAEi

9Feb, 2016

Pharming And Cytobioteck Announce Extension Of Distribution Agreement For Ruconest

 

Pharming Group N.V. has extended the exclusive distribution agreement with […]

8Feb, 2016

BioCryst Announces Results From OPuS-2

BioCryst Pharmaceuticals, Inc. has announced results from OPuS-2 (Oral ProphylaxiS-2), a clinical trial […]

2Feb, 2016

Avalanche and Annapurna Announce Proposed Merger

Avalanche Biotechnologies, Inc. and Annapurna Therapeutics SAS have entered into […]

>> See list of all news here

Check out HAEi events around the world

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Los Angeles Convention Center
Los Angeles CA United States

Mar 4, 2016 - Mar 7, 2016 at All Day

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The Torch
Doha Qatar

Mar 18, 2016 - Mar 19, 2016 at All Day

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May 16, 2016 at All Day

>> See list of all events here

Read the newsletters sent from HAEi to our subscribers

18Dec, 2015
26Nov, 2015
28Oct, 2015
10Sep, 2015
>> See list of all newsletters here
Stay Tuned

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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 @haeday 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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