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 Facebook, and also in email. Despite not many patients participating in the meeting, the overall mood was very good and familiar. As part of the program, in the first section, the invited representatives of pharmaceutical companies had the opportunity to share their news. First, Tamas Soroncz-Szabó from Takeda informed the group about the latest studies they conducted. After that, Zoltán Vilimszky from ExCEEd Orphan shared news about the new packaging introduced for Ruconest in the last year and offered their help and support to continue the self-administration training for HAE patients.
Professor Farkas introduced her new colleagues Lili and Hanga to the group and gave an overview of the tremendous work they do at the HAE Center and Laboratory with Lilian Varga, who was also present at the meeting.
We also discussed the wonderful and, again, very successful 13th C1-inhibitor Deficiency & Angioedema Workshop in Budapest with about 400 participants. Then, Peter Strahl took the stage, and he told us about his experiences from the 2023 HAEi Regional Conference EMEA. We also discussed the experiences from the Rare Disease Day from back in February. At the end of the meeting, all the patients talked about how their lives are affected by the opportunity to try out new, modern medications, and we heard wonderful stories about how they have been symptom-free for almost 1.5 years or more. Two hours just flew away and we had a very good time again! See you next year, and we hope to have a face-to-face meeting next year!
