BioCryst Launches Orladeyo (berotralstat) in Spain

November 21, 2023|HAEi News|

BioCryst Launches Orladeyo (berotralstat) in Spain Biocryst Pharmaceuticals Inc today announced that the Spanish Ministry for Health (Ministerio de Sanidad) has granted marketing authorization for oral, once-daily Orladeyo (berotralstat) for the routine prevention of [...]

European Commission approves label update for lanadelumab

November 17, 2023|HAEi News|

European Commission approves label update for lanadelumab, for a broader group of pediatric patients with recurrent attacks of hereditary angioedema (HAE) Takeda today announced the European Commission has approved Takhzyro (lanadelumab) for the routine [...]

Intellia receives EU orphan drug designation for NTLA-2002

November 14, 2023|HAEi News|

Intellia Therapeutics receives European Union orphan drug designation for NTLA-2002, an investigational in-vivo CRISPR genome editing treatment for Hereditary Angioedema Intellia Therapeutics today announced that the European Commission (EC) has granted orphan drug designation [...]

Kalvista announces Phase-3 KONFIDENT trial milestone

November 13, 2023|HAEi News|

Kalvista Pharmaceuticals announces Phase-3 KONFIDENT trial milestone achieved KalVista Pharmaceuticals provided clinical trial and regulatory updates for its lead program sebetralstat, in development as a potential oral on-demand therapy for hereditary angioedema (HAE). Clinical [...]

News from Mozambique

November 11, 2023|Africa, Mozambique|

Please join us in welcoming yet another member country to the global HAE family: HAE Mozambique as member country no. 98. The national contact is Daniella Nhaguilunguana. >> Read more about HAE Mozambique on the [...]

News from Kosovo

November 11, 2023|Europe, Kosovo|

HAEi is delighted to have welcomed HAE Kosovo as country no. 97 to join the global HAE family. The national contact is Edison Sylejmani. >> You can read more about HAE Kosovo on the country [...]

News from USA

November 11, 2023|North America, United States of America|

The US HAEA is committed to delivering engaging and informative programs, services, and activities to our expansive membership of over 8,000 individuals. These initiatives aim to unite the HAE community in pursuit of our [...]

News from Croatia

November 11, 2023|Croatia, Europe|

From Mihaela Sogoric, HAE Croatia The Association of Patients with Hereditary Angioedema HAE Croatia successfully organized the 3rd meeting of parents and children suffering from HAE with pediatricians in Tuheljske toplice. The pediatricians chose [...]

News from the UK

November 11, 2023|Europe, United Kingdom|

From Angela Metcalfe, CEO and Rachel Annals, EO, HAE UK: In the last few months, we have had lots of meetings with healthcare professionals and our pharmaceutical company representatives. We have also just returned [...]

News from Switzerland

November 11, 2023|Europe, Switzerland|

From Ernst Greber, HAE Switzerland HAE Film: ‘HAE - Simply Explained’ with added French and Italian subtitles: The Swiss HAE Association has had a film produced in which the rare disease Hereditary Angioedema (HAE) [...]

News from Canada

November 11, 2023|Canada, North America|

From Michelle Cooper, President, Jacquie Badiou, Past President, and Daphne Dumbrille, COO, HAE Canada A few years ago, HAE Canada’s Past President, Jacquie Badiou, realized that HAEC would benefit from gaining accreditation from Imagine [...]

News from Peru

November 11, 2023|Peru, South America|

From Carla M. Goachet Boulanger, President, HAE Peru One of the goals of the 2023 proposed by the Board of Directors of HAE PERU was to encourage, motivate, and support the participation of youngsters [...]

News from the Netherlands

November 11, 2023|Europe, The Netherlands|

From Maria (Marijk) Beekman-Kortekaas, President HAE the Netherlands We’re back! For years, HAE the Netherlands has not been very active. A year ago, a new board took over, and we started to rebuild the organization. [...]

News from Serbia

November 11, 2023|Europe, Serbia|

From Jovana Cvetković Lazić, President, HAE Serbia Empowering HAE Advocacy: ‘Doctors in Purple’ Project Shines Light on Early Diagnosis In collaboration with esteemed medical professionals, HAE Serbia has recently unveiled the impactful ‘Doctors in [...]

News from Iran

November 11, 2023|Iran, Middle East|

From Parichehr Bahrain, HAE Iran HAE International Day (16 May 2023) in Immunology, Asthma and Allergy Research Institute, (IAARI) Tehran University of Medical Sciences, Iran On the Hereditary Angioedema (HAE) International Day, IAARI organized a [...]

News from Czech Republic

November 11, 2023|Czech Republic, Europe|

From HAE Junior HAE juniors’ families joined the fourth educational summer camp. The fourth edition of the HAE Junior’s summer camp is successfully over! Let’s take a look back at the four days we spent [...]

Postcards from Munich and Beyond!

November 11, 2023|HAEi News|

Phew, it has been a whirlwind of activity in the Youngsters’ Community. We’ve just waved goodbye to our friends with the conclusion of the 2023 HAEi Regional Conference EMEA. With 60 young people with [...]

Update from HAEi’s Global Operations

November 11, 2023|HAEi News|

Update from HAEi’s Executive Vice President Global Operations and Chief Compliance Officer, Jørn Schultz-Boysen Great to see so many people at the 2023 HAEi Regional Conference EMEA! For the past year (and longer), preparations [...]

Update from HAEi’s Global Advocacy

November 11, 2023|HAEi News|

Update from HAEi’s Executive Vice President Global Advocacy and Chief Diversity Officer, Fiona Wardman Advocacy is an essential tool to drive change. In my new role as Executive Vice President of Global Advocacy and [...]

Stay Tuned

Be the first to know what’s going on in the world of HAE

Upcoming events

Mar 15, 2024 - Mar 17, 2024
2024 HAEi Regional Conference Americas

May 16, 2024
hae day :-) 2024

Oct 3, 2024 - Oct 6, 2024
2024 HAEi Global Leadership Workshop

>> View full event calendar

HAE related topics that might interest you

Global Perspectives

Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community

HAEi Advocacy Academy

Courses, advocacy training, and tools to support people living with HAE and becoming an HAE advocate

HAEi Connect Member database

Free, secure online membership database and communications platform for HAEi’s member organizations

HAE Companion app

Access to HAEi’s emergency card in many languages and ACARE Centers, HAE knowledgeable hospitals and physicians

Stay tuned – sign up for our newsletter


HAEi hosted websites

Hosting of your national website or help for you to create a new website – naturally all in your native language

HAE TrackR app

Easy-to-use electronic diary of HAE treatments (preventative and on-demand), HAE attacks, and the impact HAE has on life