From Christian Müllner, HAE Austria

Report from the Annual Meeting in Graz on 30 September, 2023, at Hotel Weitzer.

Our chairperson, Heidi Huemer, welcomed 35 participants (patients, doctors, medical professionals, pharmaceutical representatives) to our annual meeting. In her introductory speech, she talked about the numerous tasks of our self-help group aimed at improving the quality of life for patients and their families:

  • Information about treatment options, current research status, HAE experts, and HAE centers in Austria, new competence centers.
  • Our telephone hotline 0677/63189739.
  • Self-help in adjusting to life with HAE, exchange of experiences among those affected, networking of institutions helpful for HAE, and international cooperation with HAEi.
  • Our public relations work in various media and social media at professional events.

During a year in review, Heidi provided numerous insights into our activities with a focus on Rare Disease Day on 28 February and hae day :-) on 16 May. Particularly important for us were the 2022 HAEi Global Leadership Workshop in Frankfurt in October 2022 and the 2023 HAEi Regional Conference EMEA in Munich in early September 2023.

Prof. Aberer, one of the world’s leading HAE experts, lectured on the history of HAE, the various types of HAE, and HAE in the past, present, and future. Of course, the development of treatment options was particularly important to us.

In the lecture by our board member Dr. Clemens Schöffl, the focus was on the challenges and fears in the daily life of HAE patients, at work, in leisure, during travels, and in family planning. He presented numerous study results on this topic.

Prof. Kinaciyan from AKH Vienna discussed new HAE therapies and developments. She also presented new studies conducted in Vienna, Graz, and Linz. She vividly demonstrated how these new medications intervene in the onset of an HAE attack and thus stop this cascade. These new therapies sound very promising.

At almost every meeting, there was an injection workshop with Health Care at Home and nurses from CSL-Behring, where participants could refresh and update their knowledge of self-administration or learn it for the first time, and as always, it was very well received.

In another workshop with Rene Schipits, there were interesting discussions on the topics of resilience and managing daily life. It was evident that, for many, there was a great need to talk about these issues.

During a joint lunch, further experiences were shared. The event concluded with a nice stroll through the city.

It was an extremely successful event with many interesting topics in a great setting.