History of HAE International

Often times, persistence can overcome great failure and lead to a significant breakthrough. For almost two decades, experts have unanimously agreed that C1 inhibitor concentrate is an effective and reliable treatment for HAE attacks. Indeed, it was the failure of a poorly designed C1 inhibitor concentrate clinical trial that provided the impetus for the HAE scientific and patient communities to explore ways to open better lines of communication regarding future trial designs.

Alarmed at the potential consequences of the inadequate methodology chosen for the failed trial, renowned HAE researcher Professor Marco Cicardi decided to call a short meeting of HAE experts and patient representatives to coincide with the International Complement Congress held in Palermo (Sicily) in September 2002. During this meeting, patients and physicians recognized the need for a formal alliance that would facilitate worldwide information sharing and coordination of HAE research and other activities; and the idea for HAEI was born.

A group of HAE patient advocates took up the challenge of establishing a legally recognized international patient organization that would include a prestigious medical advisory panel. By the time the C1 Inhibitor Deficiency Workshop was held in Budapest in May, 2003 there were proposals on the table of how to do this, and a final charter and mission statement were signed in a meeting held in Milan in October, 2003. Professor Cicardi and his group in Milan provided support, encouragement, and technical assistance throughout the whole process.

It took another year to overcome a series of bureaucratic obstacles, but the organization was finally registered in France in November 2004.

Since 2014 HAEi has been registered as a non-profit/charitable organization in Switzerland. The official address registered for HAEi is: Avenue de Montchoisi 33, 1006 Lausanne, Switzerland.

News

Fri, 2015-03-27

New hae day :-) website

Thu, 2015-03-19

Nominations to Pharming's Board Of Supervisory Directors

Fri, 2015-03-06

OPuS-2 study now enrolling patients

Thu, 2015-03-05

Pharming Reports On Preliminary Financial Results 2014

Thu, 2015-02-26

ISIS Pharmaceuticals Reports Positive Phase 1 Data

Tue, 2015-02-24

Dyax Corp. Announces Fourth Quarter and Full Year 2014 Financial Results

Newsletter Teaser ( In News Section on Homepage )

Newsletter

Make sure to stay updated. HAEi will keep you informed when you sign up for our newsletter.

Sign up for HAEi Newsletter and register at the same time.


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Events

Thu, 2015-05-28 13:00 - Sun, 2015-05-31 14:00

9th C1 Inhibitor Deficiency Workshop

Venue: Danubius Thermal Hotel Margitsziget, Margitsziget, 1133 Budapest, Hungary
Language: English

It is our great pleasure to invite you to the 9th C1-INH Deficiency Workshop. This event has a history of many years, as well as its nature and objectives are familiar to many of us. Nevertheless, given the continued interest from first-time attendees, we would like to introduce the Workshop for them in brief, as follows.

This conference focuses on bradykinin-mediated angioedemas, and particularly on the types resulting from C1-inhibitor deficiency. The topics of this four-day long event cover a wide range of subjects.

Read more about the workshop here.

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Fri, 2015-02-20 10:00 - Tue, 2015-02-24 16:00

AAAAI - Annual Meeting 2015

Venue: Houston, TX, United States of America
Language: English

Mark your calendars and head to Houston, Texas for the premier event in allergy/immunology. You will be able to earn CME/CE, learn about cutting-edge research and enrich your networking connections at the 2015 AAAAI Annual Meeting, February 20-24.

For more information please visit: AAAAI 2015
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Homepage Teaser 6, 2nd row right

HAE Global Community

Be part of the HAEi Community

HAEi is here to help you. Therefore we have created the HAEi Community that gives you all the bells and whistles you know from other social media (such as Facebook) and even a very sophisticated Forum, where you can discuss with fellow HAE patients and care givers. The only difference is - that here your information stays safe - and will only be shared with other HAE patients and care givers. If you are a HAE patient or directly related to a HAE patient we urge you to register today - and become an important member of our community

Help yourself and stay updated by registering already today - then you will be the first to know.....

Do you have Questions?
You can find answers on our FAQ-Page or
send us an e-mail to: info@haei.org
or go to the contact form page


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See the video from the 2012 HAE Global Conference in Copenhagen

Click here


HAEDAYHAEDAYLook out for next hae day :-) on 16 May 2014


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