NEWS
HAEGARDA now available in the province of Québec
HAEGARDA (C1 Esterase Inhibitor Subcutaneous [Human]) is now available in the province of Québec, Canada. “The availability of a new treatment option to help health care professionals and patients prevent HAE attacks is an important [...]
Information from HAE International
Mr. Steen Bjerre, HAE International’s Director of Communications, has decided to leave the organization to pursue other opportunities. HAE International appreciates Steen’s efforts over the years – and wishes him the very best in his [...]
EMA approval of new Ruconest facility
Pharming Group N.V. has received European Medicines Agency (EMA) approval of a Type II Variation for a new production facility for the Ruconest. With the addition of this new facility, Pharming will significantly increase the [...]
KalVista updates on oral treatment
“Based upon the progress of the ongoing KVD900 Phase 2 clinical trial, we expect to announce data from that trial in the second quarter of this year,” says Andrew Crockett, CEO of KalVista Pharmaceuticals, Inc. [...]
Regenxbio expects selection of lead product candidate in 2020
As first announced in July 2019, Regenxbio Inc. is developing a one-time gene therapy candidate to deliver a gene encoding a therapeutic antibody against plasma kallikrein, a key protein of the plasma contact pathway which [...]
News from the United Kingdom
From CEO Laura Szutowicz, HAE UK: The last quarter of the year sees our National Patient Days which are always well supported and are a lot of fun as well as very educational. In the UK we [...]
News from Canada
From Executive Director Peter Waite, Canadian Hereditary Angioedema Network: The Canadian Hereditary Angioedema Network has updated its 2014 Canadian Hereditary Angioedema Guideline with an expanded scope to include the management of HAE patients worldwide. It is a collaboration of Canadian [...]
News from Cuba
From HAE patient Rosa María Perez: Epinephrine, Hydrocortisone, Prednisone, Benadryl ... with every health crisis there is a bombardment of medicines with which nothing is resolved. The edema was quick – “in crescendo” – until it reached a [...]
News from the United States of America
From Ianice Viel, Patient Advocate and Social Media Manager It’s with tremendous gratitude that we wrap up an exciting year at the US HAEA filled with activities that brought us closer as a HAE family while continuing [...]
News from Brazil
From Raquel Martins, President of Abranghe - Angioedema Hereditário Brasil, HAE International has received the very good news that Takhzyro (Lanadelumab) is now approved in Brazil for the treatment of HAE. The approval comes from the Brazilian Health Regulatory Agency [...]
News from Japan
From President Beverley Yamamoto, HAE Japan (HAEJ): HAEJ applied for the 3rd PASE Award from EFPIA (European Federation of Pharmaceutical Industries and Associations) – PASE is Patient Advocacy Support by EFPIA. HAEJ applied for a project on paediatric [...]
News from Colombia
The HAE patient group in Colombia has now been legally constituted as Asociación Colombiana para Angioedema Hereditario. Jessika Torres Flórez is President of the organization while Carolina Torres Flórez is Vice President. See more at https://haei.org/location/hae-in-colombia.
News from South Africa
From President Adrienne de Jongh, HAE South Africa: The Global Access Program importing Ruconest is now running smoothly and proving to be very successful. There is a fair amount of administration involved though and we are grateful that the [...]
News from Switzerland
The 18th General Assembly of the Swiss HAE Association took place 8 November 2019. President Helene Saam welcomed 22 members. All agenda items were decided unanimously. The next year’s meeting will take place in Zurich on 20 June 2020 [...]
News from Venezuela
Fundacion AEH de Venezuela (HAE Venezuela) has formed an alliance with the Venezuelan Society of Asthma, Allergies and immunology (SVAAI) and the Venezuelan Primary Immunodeficiency Network (RVIDP).
News from Hong Kong
From Sandy Chan, HAE HK: HAE HK was formed in August 2019 by patients in Hong Kong with HAE and incorporated as a limited company in Hong Kong on 7 November 2019. Tax exemption will be applied. HAE [...]
News from Australia and New Zealand
From CEO Fiona Wardman, HAE Australasia: HAE Australasia has submitted the ethics application to join the Global Registry in Australia. We hope to have a positive answer very soon so we can start rolling out the project around [...]
News from Pakistan
We are happy to inform you that HAE International has been joined by country no. 84. A warm welcome to Pakistan, represented by national contact Moazzam Farooq. You can follow HAE Pakistan via https://www.facebook.com/groups/142032642667972.
2019 HAEi Regional Workshop Central Eastern Europe
By Michal Rutkowski, Regional Patient Advocate for Central and Eastern Europe, Gulf Region & Middle East: The penultimate weekend of October 2019 saw the largest gathering of the year of the HAE International Central Eastern Europe community. [...]
2019 HAEi Regional Workshop South Eastern Europe
By Natasa Angjeleska, Regional Patient Advocate for South Eastern Europe: We successfully managed to realize the fourth regional HAE International South Eastern Europe workshop at the Marriott Hotel in Skopje, North Macedonia 27-29 September 2019. We had 85 [...]
HAE Scandinavia Conference 2019
By President Henrik Balle Boysen, HAE Scandinavia: During the weekend 8-10 November 2019 HAE Scandinavia conducted its third Scandinavian conference – this time in Oslo, Norway. Around 125 participants from Denmark, Norway and Sweden as well as four patients [...]
Getting ready for the 2020 HAE Global Conference
The 2020 HAE Global Conference in Frankfurt, Germany is only about five months away, and at HAE International everyone is doing their part to get the largest HAE gathering ever ready. “At this point, all travel grants have been [...]
News from Costa Rica
From Regional Patient Advocate Javier Santana: Costa Rica has had its 1st Costa Rican Allergy Congress where Dr. Mario Martínez, who helps the group of HAE patients in the country, offered a comprehensive presentation on HAE to all attending [...]
News from Panama
From Regional Patient Advocate Javier Santana: The HAE patient group in Panama is now officially and legally registered in the country. The group, together with Dr. Olga M. Barrera, has participated in several conferences in the interior of the [...]
News from Bangladesh
From Regional Patient Advocate Fiona Wardman: I am in contact with physicians and patients in Bangladesh, as such, communication will continue to establish how to assist patients and educate physicians.
Stay Tuned
Be the first to know what’s going on in the world of HAE
Upcoming events
Apr 1, 2020 - May 31, 2020
HAE Global Walk 2020
Apr 18, 2020
HAE Spain (AEDAF): General Assembly and Annual Meeting
May 13, 2020 - May 14, 2020
HAEi Jakobusweg Walk 2020 - long distance
Germany
May 14, 2020 - May 17, 2020
HAE Global Conference 2020
Check out our latest newsletters
HAE related topics that might interest you
Global Access Program
Helping to change the lives of patients with hereditary angioedema (HAE) with a medication access program
Global Perspectives
Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community
HAEi Connect Member database
Free, secure online membership database and communications platform for HAEi’s member organizations
Regional Patient Advocates
Constantly strive to improve the situation for HAE friends all over the world – no matter how they are organized
Stay tuned – sign up for our newsletter
BE THE FIRST TO KNOW ABOUT HAE NEWS, TREATMENTS, EVENTS AND RELATED TOPICS