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.

News

Thu, 2014-04-03

Dyax Receives FDA Approval to Expand Use of Kalbitor(R)

Thu, 2014-03-27

From the Shire 2013 Annual Report

Fri, 2014-03-14

Dyax Announces Pricing of $74 Million Public Offering of Common Stock

Tue, 2014-03-04

Patient Satisfaction and Convenience Increased with Current HAE Treatment Options, According to Study Findings

Mon, 2014-03-03

BioCryst Presents BCX4161 Phase 1 Trial and Kallikrein Inhibition Assay Results

Fri, 2014-02-28

More travel grants for HAE Global Conference 2014 now available

Newsletter Teaser ( In News Section on Homepage )

Newsletter

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Events

Fri, 2014-05-16 (All day)

2014 hae day :-)

On 16 May 2014 patient organizations throughout the globe will hold events, meetings, and fundraisers to support the global awareness day hae day :-)

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Thu, 2014-05-15 12:00 - Sun, 2014-05-18 12:00

2014 HAE Global Conference

Venue: Hyatt Regency Reston, 1800 Presidents St., Reston, VA 20190, United States of America
Language: English

HAEi - International Patient Organization for C1 Inhibitor Deficiencies cordially invites you to attend the 2014 HAE Global Conference which will take place in Washington DC, 15 - 18 May 2014.

Registration for the conference is now open! Registration will take place on a first come, first serve basis – and since we again offer some extremely attractive registration rates and conditions, please do not wait too long registering for this exciting conference.

Please register here

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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


www.haeday.org