On November 30, 2024, the first face-to-face club meeting of the Hungarian Patient Organization after COVID-19 was held. The location was the clinic of the Semmelweis University of Medicine. There are 220 registered patients in Hungary, of which 165 are association members.

The event was attended by 50 people, 30 of our fellow patients, and representatives of pharmaceutical companies from CSL Behring, Pharming, Swixx BioPharma, and Takeda. Our doctors also participated in the event: Prof. Dr. Henriette Farkas is the head of the Hungarian ACARE center; her right hand Dr. Hanga Horváth; Lilian Varga, head of the Complement lab; Dr. Beáta Visy is a doctor at the Madarász utca Children’s Hospital, who helps the Hungarian HAE center in many HAE trials, Prof. György Harmat, who was the general director of the Heim Pál children’s hospital and continuously helps and has helped with the care of HAE children, and Judit Bali, who brings together and coordinates the work of the Hungarian ACARE center.

The program of the event consisted of the following agenda:

The Patient Organization welcomed the participants and thanked them for their interest and for taking the trouble to participate. Dr. Prof. Henriette Farkas also greeted the participants.

A report on the patient organization’s work and financial situation this year, as well as the tasks ahead of us next year. Among these, there are two important tasks: the renewal of the foundation document of the association, which is already more than 25 years old. The patient organization must comply with the new legal requirements. Among our other tasks, we can mention participation in tenders and their preparation…

We also reported on the 2 most important events: The Day of Rare Diseases, held in Sopron in February, and the GLW and GAF, held in Copenhagen in October.

Then, Dr. Hanga Horváth summarized the research results achieved in the past year and the current events related to drug supply.

Then, there was a short discussion between patients and doctors about current issues and topics of interest to everyone. We agreed that such events will still be needed in the future in order to strengthen each other …