HAE 2018-01-28T00:03:30+00:00

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

23Feb, 2018

FDA accepts BLA for Lanadelumab

The U.S. Food and Drug Administration (FDA) has accepted the [...]

23Feb, 2018

Shire recognizes Rare Disease Day 2018

Shire plc announces its continuing global education and awareness efforts [...]

20Feb, 2018

Accelerating time to diagnosis for children with rare diseases

Shire plc, Microsoft and EURORDIS-Rare Diseases Europe has formed a [...]

>> See list of all news here

Check out HAEi events around the world

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La Paz University Hospital
Madrid Spain

Mar 10, 2018 at All Day

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Pecos Legacy Park
Henderson NV United States

Mar 24, 2018 at All Day

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– Language: English

Mar 24, 2018 - Mar 28, 2018 at 10:00 am - 3:00 pm

>> See list of all events here

Read the newsletters sent from HAEi to our subscribers

22Dec, 2017
27Sep, 2017
30Jun, 2017

HAEi Magazine June 2017

30Mar, 2017
>> See list of all newsletters here

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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

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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!

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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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