– yet another virtual event

Due to the uncertain situation caused by the COVID-19 pandemic, the 12th C1-Inhibitor Deficiency and Angioedema Workshop was held online on 3-6 June 2021. The command center of the workshop was the studio of Diamond Congress, with Professor Henriette Farkas and Senior Research Scientist Lilian Varga once more as the main organizers. 

As Professor Farkas said in the opening of the conference, “a virus that only has a couple of thousand bases and does not have a DNA cannot interrupt our 20-year-long tradition; we must keep our community, our HAE family, together”. 

The organizers tried to see the positive side of the changed circumstances and use the opportunities modern devices present, with Diamond Congress providing professional help. In addition, the main sponsors CSL Behring, KalVista, Pharming, Pharvaris and Takeda, as well as the sponsors Biocryst and Biomarin, provided financial support, which made conducting the event in high quality possible. 

“The organizers believed in the mystic power of 12, and looking back, it seems like it was a good omen because a record number of 438 people connected to the conference, from 51 countries. We can declare that the four-day-long conference has lived up to the audience’s expectations, and just as in previous years, we could participate in a high-quality professional congress. The scientific program consisted of seven oral and two poster sections, where 35 lectures and 21 posters were presented. All the abstracts evaluated by the Scientific Committee will be published in the highly esteemed scientific journal Frontiers in Allergy”, says PhD student Zsuzsanna Balla from the Hungarian Angioedema Center of Reference and Excellence at Semmelweis University in Budapest, Hungary.

The conference was opened by Professor Attila Szabó, the Vice-Rector for clinical affairs, who emphasized that “the equation in the 21st century is science + information = power”. Under this context, basic, clinical, and translational research should be used to improve the health and quality of life of people around the world.

One of the opening day highlights was the awarding ceremony of the “for HAE Patients” award. The lifetime achievement award established in 2003 is given by the Scientific Committee to a colleague who has contributed to understanding the processes causing angioedematous diseases with their research and has done outstanding work for the patients. This year, the winner was Clinical Professor of Medicine Allen Kaplan, presented by HAEi’s President, Anthony J. Castaldo. After this, Professor Kaplan presented his work in an outstanding, impressive, and comprehensive presentation titled “Kininogen(s) structure and function”. It was a touching moment when Allen Kaplan logged in live, and the organizers welcomed him from the studio in Budapest with a surprise cake and champagne, which helped in reducing the social distance caused by the pandemic. 

This time, six prominent invited experts talked about the different aspects of angioedemas:

Daniel Jacobson, Chief Scientist for Computational System Biology of the Oak Ridge National Laboratory in the USA, spoke on a method based on systems biology and artificial intelligence that could prove that the bradykinin-storm is the cause of several symptoms of COVID-19, and therefore the medications already authorized for the treatment of C1-INH-HAE could potentially be effective in treating COVID-19 patients.

Marcus Maurer, the Dermatologist and Allergologist Professor of Charité University Hospital in Berlin, Germany, presented the global initiative GA2LEN /HAEi ACARE with the purpose to treat and defeat the global challenges of HAE, to abolish global inequalities, and to review and update the current guidelines about HAE.

Coen Maas, who is a Professor at the Department of Clinical Chemistry and Haematology at the University Medical Center Utrecht in the Netherlands, presented results according to which the closed conformation of FXII is critical to prevent detrimental activation. Any mutation that prematurely disrupts it has a chance to result in a thromboinflammatory disease.

László Cervenak, a Senior Researcher at the Department of Internal Medicine and Haematology at Semmelweis University in Budapest, Hungary, emphasized that new factors, besides the old ones, surfaced in the pathogenesis of angioedema and that endothelial cells play a key integrative role in the development of angioedemas. 

Francois Alhenc-Gelas, Research Director of INSERM in Paris, France, presented evidence that indicates that the clinical development of kinin receptor agonists, especially of B1R, is warranted with the aim of cardiovascular prevention, particularly in diabetes. 

Konrad Bork, Dermatologist Professor at the Johannes Gutenberg University of Mainz, Germany, presented the developing constellation of genes involved in the pathogenesis of angioedema.

“The scientific program was very diverse. Regarding the treatment of HAE, we learned about the new bradykinin B2-receptor antagonist PHA-022121, a Factor XII inhibitor monoclonal antibody called garadacimab, which could be administered subcutaneously for long-term prophylaxis, and another new oral medication for the treatment of acute HAE attacks, the small molecule KVD900, which is a plasma kallikrein inhibitor. Colleagues presented about genetic studies and new gene therapy methods; the possibilities of measuring patients’ quality of life, experiences with different treatments; prodromal symptoms; and we could continue listing the long line of interesting topics”, says Zsuzsanna Balla.

Being together in person cannot be replaced. Still, the organizers tried to add some items to the program that provided an opportunity to relax a bit and, casually, cheerfully be together. Making the event more colorful was a QR code hunt and virtual sightseeing in Budapest, where the participants could ask questions from the tour guide. For the virtual gala dinner, everybody prepared the “mutual” gala menu, and ate it “together”, and could compete for the title of “best chef”. A spectacular sand animation inspired by different melodies was performed by Ferenc Cakó, a multiple international award winner Hungarian graphic, who was also part of the opening ceremony. A short film about the history of the conference presenting how the first C1-inhibitor workshop has evolved into a world-class event evoked cheerful memories. 

“HAE family members were saddened by the fact that three giant scientists of the HAE community have passed away. We remembered Michael Frank, Marco Cicardi and José Fabiani with sadness. It is a tremendous loss for the HAE community, but the memories in our hearts and souls and their scientific work will last forever and provide a solid base for further research”, says Zsuzsanna Balla.

True to the traditions of the previous years, four researchers younger than 35 – Aycan Aşik, Francisca Vílchez-Sánchez, Nina Rupar and Zsuzsanna Balla – received the “Grant For Young Investigator” award, which goes with a 2,500 EUR scholarship per capita. 

Professor Anastasios Germenis summarized the essence of the conference in his excellent closing remarks. As Avner Reshef, the winner of the “Most active participant” price wrote at parting: ”Despite the pandemic, despite the critics, despite the sceptics, despite the distance, the workshop proved that science can unite people who are eager to work together toward a common goal.”

Zsuzsanna Balla emphasizes that it was very good to be together with the big HAE family, where the motto is: we are together, we remain together, we will be together:

“Let us hope that the number 13 will bring luck, and we can meet in 2023 in Budapest in person.”

The complete recorded material of the 12th C1-Inhibitor Deficiency and Angioedema Workshop is available on the website of the conference until August 2021 – please see >> 2021.haenetworkshop.hu