Thu, 2015-02-26
ISIS Pharmaceuticals Reports Positive Phase 1 Data

Isis Pharmaceuticals, Inc. announces positive results from a Phase 1 study with ISIS-PKKRx. In this study, healthy volunteers treated with ISIS-PKKRx achieved dose-dependent reductions of up to 95 percent in prekallikrein, or PKK. ISIS-PKKRx is a RNA-targeted antisense drug designed to inhibit the production of PKK for the prophylactic treatment of HAE.

Tue, 2015-02-24
Dyax Corp. Announces Fourth Quarter and Full Year 2014 Financial Results

Dyax Corp. has announced financial results for the fourth quarter and year ended December 31, 2014. Recent highlights include:

  • Completion of dosing in the expanded Phase 1b study of DX-2930 in HAE patients; 
  • Kalbitor net sales were 18.9 million USD for the fourth quarter of 2014 and 68.3 million USD for the full year;

Mon, 2015-02-23
Shire calls for improved rare disease diagnosis on Rare Disease Day 2015

Shire plc announces its support of Rare Disease Day 2015 by calling for improvements in the journey to diagnosis for those living with a rare disease. Under a new educational initiative, “Diagnosis Doesn’t Have to be Rare”, Shire is launching a series of educational materials for Rare Disease Day, highlighting the often challenging rare disease diagnosis journey many patients face. The materials aim to help raise awareness of rare diseases, as knowledge and information are critical to early diagnosis and play a major role in empowering patients and their families.

Thu, 2015-02-19
Pharming Group: A Potential Genzyme In The Making

Pharming Group has developed Ruconest — a recombinant protein drug for the treatment of HAE which was approved in July 2014 by the FDA for the treatment of HAE attacks and recorded its first US sales in November 2014. Ruconest is also commercialized in Europe since 2010.

Wed, 2015-02-18
BioCryst Reports Fourth Quarter & Full Year 2014 Financial Results

"We are proud of our 2014 achievements; most notably our successful completion of the BCX4161 OPuS-1 trial and the initiation of OPuS-2 for the treatment of HAE," said Jon P. Stonehouse, the BioCryst Pharmaceuticals President & CEO upon the presentation of the company's financial results for the fourth quarter and full year ended December 31, 2014. "We have also made substantial progress in our 2nd generation kallikrein inhibitor program and are now preparing BCX7353 to enter Phase 1 testing as a potential once-daily oral treatment to prevent HAE attacks."

Teaser 4, 2nd row left, in news section

United We Stand Strong!

HAEi cares about you. We encourage patients to get organized - because "United We Stand Strong".

HAE International - Thumb 7HAE International - Thumb 7Become a National Member Organization (NMO). We are here to help you in founding a National Member Organization. Follow our step-by-step model. It doesn't have to be a difficult task creating the best foundation for patients in your country. Contact us for more information here

HAE International - Thumb 4HAE International - Thumb 4

Starting a National Patient Group (NPG). If you are interested in doing more around HAE - but don't feel that starting a full NMO is the right option here and now. You should maybe consider becoming a contact patient (NPG) for your country. Contact us here

Both NMO's and NPG's enjoy free membership of HAEi. Also we can help you host your country specific website under the global umbrella of HAEi.


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.

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

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:
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