News from Slovenia

2024-01-29T12:09:51+01:00January 29, 2024|Slovenia|

From Teja Iskra, HAE Slovenia After years of struggle and struggle, my family once again helped me so that I could fulfill my dreams. Finally, I can proudly say that the HAE Slovenia Patient Association was officially founded. I’m proud that I finally made it. And now the real work begins. First and foremost, [...]

News from Denmark, Norway and Sweden

2024-01-29T12:07:22+01:00January 29, 2024|Denmark, Europe, Norway, Sweden|

From Jørn Schultz-Boysen, Vice President, HAE Scandinavia “Stronger Together”: Highlights from the 2023 Scandinavian Conference by HAE Scandinavia in Malmö: The welcoming city of Malmö, Sweden, played host to a memorable gathering from 10-12 November 2023, as HAE Scandinavia proudly presented the 5th Scandinavian Conference. Embracing the theme “Stronger Together,” more than 100 participants [...]

News from Russia

2024-02-09T14:44:28+01:00January 29, 2024|Central Asia, Europe, Russia, Russia|

From HAE Russia September: HAE Russia, together with the National Medical Research Center for Pediatric Hematology, Oncology and Immunology, named after Dmitry Rogachev, began a sociological study to study the quality of life and psychological state of patients diagnosed with HAE: The relationship between the intensity of swelling and the level of quality of life [...]

News from Poland

2024-01-29T11:57:18+01:00January 29, 2024|Europe, Poland|

From Michal Rutkowski, HAE Poland In late June/early July, HAE Poland (also known as the Swelling Beautifully Association) organized the first-ever HAE Poland Youngsters Summer Workshop. This event was part of Dominika Blacharska’s HAEi LEAP project; Dominika is an HAEi Youngsters Advisory Group member and an HAE Poland Regional Patient Advocate. The project was [...]

News from the Netherlands

2024-01-29T11:19:53+01:00January 29, 2024|Europe, The Netherlands|

From Maria (Marijk) Beekman-Kortekaas, President HAE The Netherlands It’s hard to believe that we’re already wrapping up the year. So many great things have happened since January. We worked hard to reinvigorate HAE The Netherlands. We managed to create a new website. We’re grateful that our HAE specialists at the ACARE center in Amsterdam [...]

News from Ireland

2024-01-23T13:08:26+01:00January 23, 2024|Europe, Ireland|

From Bettina Carty, HAE Ireland It has been a quick year, and my first one as the national contact in Ireland. Our group is small but growing all the time, and with the help of immunology teams letting their patients know we are here, hopefully, that number will grow. I had the pleasure of [...]

News from Hungary

2024-01-23T13:15:28+01:00January 23, 2024|Europe, Hungary|

From HAE Hungary The Hungarian HAE Patient Association held its yearly patient meeting on 22 November in an online form. Thanks to HAEi, who helped to set up the Zoom meeting for the invited patients, caregivers, healthcare professionals, and the representatives of the pharmaceutical companies. The meeting was advertised on the association’s homepage, on [...]

News from Belarus

2024-01-12T13:55:05+01:00January 12, 2024|Belarus, Europe|

From Viktar Lebedz, HAE Belarus A year ago, in December 2022, updated official protocols for treating HAE attacks were approved. For the first time, C1 inhibitor drugs and lanadelumab were included in the treatment guidelines. Starting from January 1, 2024, the updated document “List of Essential Medicines” comes into effect, which includes the C1 [...]

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