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!

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Read the latest news from HAEi

19May, 2015

HAEi around the globe

HAEi is a global network organization dedicated to raising awareness […]

18May, 2015

Pharming and Clinigen Group Initiate “HAEi GAP” Global Access Program

Pharming Group N.V. and Clinigen Group plc have entered into […]

16May, 2015

Plans for an exciting HAE Global Conference

Following the very successful HAE conferences in Copenhagen, Denmark in […]

>> See list of all news here

Check out HAEi events around the world

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Danubius Thermal Hotel Margitsziget
Budapest Hungary

May 28, 2015 - May 31, 2015 at 1:00 pm

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CCIB – Centre Convencions Internacional de Barcelona
Barcelona Spain

Jun 6, 2015 - Jun 10, 2015 at 12:00 am

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Carlsberg Museum & Business Centre in Copenhagen
Copenhagen V Denmark

Sep 17, 2015 - Sep 18, 2015 at All Day

>> See list of all events here

Read the newsletters sent from HAEi to our subscribers

16May, 2015

HAEi Newsletter May 2015

2Mar, 2015
5Jan, 2015
2Dec, 2014
>> 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 interest in HAE.Join HAEi on Facebook
Follow @HAEiTwit on Twitter and join our discussions about HAE topics.
Use #HAEi, #hereditaryangioedema or #haeday when twitting.Follow HAEi on Twitter
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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

 

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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 usefull 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 would 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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