News

Thu, 2015-01-29
First 2015 newsletter out now

Today we are publishing the first 2015 edition of the HAEi newsletter. We hope that you will be among the many readers -­ please download it as a pdf document here.  

As always, please let us know what you believe should be included in future newsletters and feel free to submit articles on any topics that you believe would be of interest to other readers.

Mon, 2015-01-26
FDA Grants Fast Track Designation for BCX4161

The U.S. Food and Drug Administration (FDA) has granted Fast Track designation for BCX4161, an orally administered, selective inhibitor of plasma kallikrein in advanced clinical development for the treatment of HAE from BioCryst Pharmaceuticals.

Thu, 2015-01-22
Shire Added to Global 100 Sustainability Index

For the first time Shire has been placed in the Global 100 Sustainability Index, ranking 62nd in the index.

The Global 100 Index is a global ranking by Canada-based media and investment advisory company, Corporate Knights, of the top sustainability performers and has come to be recognised as the gold standard in corporate sustainability analysis. The Global 100 Index is determined from public data using twelve quantitative sustainability indicators which include leadership diversity, employee compensation, tax paid, innovation capacity, and energy and water use, among others.

Wed, 2015-01-14
BioCryst Receives Positive Opinion on European Orphan Drug Designation for BCX4161 for the Treatment of HAE

The Committee for Orphan Medicinal Products (COMP) of the European Medicines Agency (EMA) has issued a positive opinion on the application for orphan drug designation for BCX4161 for the treatment of patients with HAE.

The European Commission will make a final decision on European Orphan Drug Designation based upon the COMP positive opinion.

On December 23, 2014, the U.S. Food and Drug Administration (FDA) granted orphan drug designation for BCX4161.

Thu, 2015-01-08
First Patient Treated In Clinical Study Of Ruconest For Prophylaxis Of HAE

Pharming Group NV and Salix Pharmaceuticals, Ltd. today announced that the first patient was treated in their Phase 2 clinical study of Ruconest, (C1 Esterase Inhibitor [Recombinant]) 50 IU/kg, for prophylaxis in patients with HAE.

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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.

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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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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