HAE Hungary held the first-ever online event on 30 November 2020 with about 20 participants including patients, physicians, and representatives of the pharmaceutical companies Takeda and ExCEEd Orphan representing Pharming. It was a great two-and-a-half-hour meeting. 

At the first part of the meeting, Zoltan Maros, the Secretary of HAE Hungary talked about the events of 2020 where the association took part. The first one was the Rare Disease Day on 29 February which was just before the pandemic lockdown in Budapest. Raising the attention of the public and decision-makers was accompanied by colorful, scientifically valuable programs and, last but not least, programs organized with great devotion for those involved, including children. 

The Hungarian rare disease umbrella organization (RIROSZ) held its preparatory on-line conference just three days before our patient meeting. The ambitious goal of this meeting was to urge the government’s public health arm to rev up the planning process of Europlan 2020, dealing with the rare disease patients’ issues.

Our online meeting attendees got some insight from it both from Istvan Nagy, President of HAE Hungary, and from the representatives of the pharmaceutical companies.

After that Zoltan Maros talked about the HAE Virtual Global Conference and also about the program for the upcoming 2020 HAEi Virtual Regional Workshop Central Eastern Europe & Benelux. Zoltan and Istvan summarized the 2019 CEE workshop which was held in Warsaw, Poland. After discussing these events, Professor Henriette Farkas, the co-chair for professional affairs of the organization, and Zoltan Maros reported about the Takeda workshop about the journey of the HAE patients. It was a really interesting one-day workshop in the Hungarian Takeda office. 

Then Professor Farkas talked about the current state of the HAE Center of Reference and Excellence, because the center moved to a new department of the Semmelweis University in Budapest. She mentioned that the center has introduced telemedicine for the yearly visits to avoid COVID-19 exposure of the HAE patents. Also, we heard some good news about Beata Visy, MD, who defended her PhD thesis about the “Evaluation of factors influencing the onset of HAE attacks” with excellent results. Last, but not least Professor Farkas told good news about the 12th C1-Inhibitor Deficiency and Angioedema Workshop to be held 3-6 June 2021.

Before the participants started the free chat, Istvan Nagy explained the patient organization’s financial year and the organization held its yearly meeting, too. All participants chatted about their pandemic experiences and how they deal with it in their everyday life. The first online meeting was a great success, and everybody agreed that in 2021, HAE Hungary has to organize these kinds of meetings regularly. 

From Henriette Farkas, Chairperson of the 12th C1-inhibitor Deficiency & Angioedema Workshop

It is our great pleasure to invite you to the 12th C1-inhibitor Deficiency & Angioedema Workshop, which will take place 3-6 June 2021, for the first time in cyberspace.

Since health and safety is extremely important for us, we decided not to organize a conventional Workshop in 2021, so in order to keep our community together, we will step into the virtual world with our meeting this year. However, the aim is the original: To provide you with presentations and discussions of the latest scientific findings related to bradykinin-mediated angioedemas. 

Our main objective is to maintain the high level of professional and scientific content in the cyberspace, too, or even raise the Workshop’s quality by taking the advantages of virtual event. In addition to this, we will provide you with a lot of fun and surprises which aim to compensate you for the lack of the physical presence. We hope to be able to show you in a brand-new way how great an online event can be. We encourage you to join.

To read further information on the Workshop, please visit 2021.haenetworkshop.hu. Please note that the site is still under construction – the online registration and abstract submission are coming soon.