By Michal Rutkowski, Regional Patient Advocate for Central Eastern Europe, Benelux and Middle East
It has become a tradition that each year October brings the largest annual gathering for the HAEi community in Central Eastern Europe and Benelux. Part of the tradition is that Poland hosts a yearly regional advocacy event dedicated to patients, caregivers and physicians constantly working in awareness, diagnosis, access and reimbursement to make HAE patients’ lives better and easier. These regional workshops have always been great opportunities to meet and greet the newcomers to the HAEi world and share experiences with other members of the global HAE family. Here unbreakable bonds have been forged, which continue to this day.
Due to the COVID-19 pandemic, HAEi was unfortunately forced to cancel the 2020 workshop in the form in which it had been held previously. However, the promise HAEi gave to the patients, and the importance of regional advocacy efforts made the global organization decide to organize a virtual edition of this event.
The virtual world gives us more opportunities, especially to reach those patients who have not been able to participate in such meetings or those who have encountered a language barrier. There is indeed absolutely no substitute for a face-to-face meeting, but at least with today’s technology, we are able to continue our hard work. And as we all know, hard work pays off.
Therefore, we rolled up our sleeves and got down to keep the promise and deliver a virtual workshop. We started our activities in September 2020, and it turned out quite quickly that when it comes to organizing a virtual event is much more complicated than a traditional one. For many weeks several people from the HAEi team met regularly to discuss the work progress and jointly solve the obstacles encountered. The prepared program turned out to be extremely ambitious as well as very demanding in preparation. The assumptions made at the beginning of reaching as many patients as possible required the preparation of presentations and videos in 11 languages: English, Armenian, Czech, Dutch, French, Georgian, Hungarian, Lithuanian, Polish, Russian, and Slovak. Only in this way could we ensure that the prepared content would reach and be understood by all patients, caregivers and physicians, including those who only speak their native language.
The 2020 keynote speakers for the regional workshop were:
- HAEi Leadership members: Fiona Wardman (Chief Regional Patient Advocate), Anthony J. Castaldo (President and CEO) and Henrik Balle Boysen (Executive Vice President and COO);
- HAEi member organizations from Belarus, the Czech Republic, Georgia, Hungary, Kazakhstan, Lithuania, the Netherlands, Russia and Ukraine;
- HAEi Youngsters Advisory Group member Nanna Boysen;
- Professor Henriette Farkas, MD, PhD, DSc, HAE Center at Semmelweis University in Budapest, Hungary;
- Professor Markus Magerl, MD, Department of Dermatology and Allergy, Charité University Hospital in Berlin, Germany;
- Professor Marcus Maurer, MD, Clinic for Dermatology, Venerology and Allergology, Charité University Hospital in Berlin, Germany;
- Professor Marc Riedl, MD, MS, US HAEA Hereditary Angioedema Center at the University of California San Diego, USA;
- Marcin Stobiecki, MD, PhD, National HAE Center at the University Hospital in Krakow, Poland.
The workshop topics were divided into five sessions: Welcome, HAE International, Experts, Patients and Youngsters.
Session 1 (Welcome) was a message to all attendees from HAEi Leadership and the Regional Patient Advocate. Fiona Wardman, Anthony J. Castaldo, Henrik Balle Boysen, and I had a brief introduction and welcome to the followers of the workshop.
Session 2 (HAE International) was a presentation of the changes taking place within HAEi’s structure, the aim of which is to create the best possible environment for patients, to accelerate a correct diagnosis process, and to reach access to modern HAE treatment options:
Fiona Wardman introduced HAEi’s decentralized approach, what it is, and why the organization has decided to develop it. Fiona acknowledged the importance of the Regional Patient Advocate program, its values, and the general recipe for success. Also, she underlined what the Regional Patient Advocate mean for individual patients and their families. Furthermore, Fiona explained the Regional Advisory Groups (RAGs) and the Regional Medical Advisory Panels (RMAPs), practical solutions that that helps HAEi to understand the current needs and challenges in the countries from both the patients’ and the physicians’ perspective. She also introduced some of the tools available for HAEi member organizations.
Anthony J. Castaldo and Henrik Balle Boysen explained how HAEi has built the foundation to ensure patients a better future. Tony highlighted that most of all HAEi is a company and product neutral non-profit organization working with anyone who steps up and makes an investment in developing a lifesaving HAE medicine. Tony and Henrik presented a few of the latest HAEi tools, including HAEi Advocacy Academy, HAE Companion, and ACARE, as well as HAEi Research tools: Pharmacoeconomic and Quality of Life Assessment, Baseline Burden of Illness Survey and Heat Map Survey. Finally, Henrik introduced the new approach to HAEi’s meetings: HAEi Regional Conferences and HAEi Global Leadership Workshop.
Anthony J. Castaldo and Marcus Maurer focused on Angioedema Centers of Reference and Excellence (ACARE), a joint venture of HAEi and GA2LEN, a non-profit organization of leading clinical and research facilities in the field of allergy and asthma.
I had the privilege to present resources that HAEi offers to its members. I explained what the specific tool is about and how it can benefit both the organizations and individual patients.
Session 3 (Experts) was a true display of knowledge of four outstanding HAE expert physicians, who, in words understandable to patients and their relatives, explained important issues related to HAE:
Marc Riedl presented the background of HAE, where he focused on explaining what HAE really is, what causes HAE, what the symptoms are, and why it is so difficult to diagnose it, and the burden of the disease. He also gave a pure history lesson introducing the pioneers in HAE, people who first described the symptoms.
Marcin Stobiecki explained in detail how to approach the correct diagnostic process with HAE. He discussed the available diagnostic methodology: blood tests and genetics, reference ranges, as well as the importance of patients’ family history.
Marcus Magerl presents the recommendations from the international guideline for the management of HAE, which e.g recommends that all HAE attacks are considered for on-demand treatment, and that treatment is initiated as early in an attack as possible. Furthermore, he described on-demand and long-term prophylaxis treatment options.
Henriette Farkas presented the specificity of the disease in children and women. She highlighted similarities and differences in symptoms, attacks frequency, and trigger factors. She also focused on the best available treatments for different types of patients (pediatric and pregnancy).
Session 4 (Patients) belonged to the leaders of HAEi member organizations who were interviewed, and answered questions on the current state of management of HAE in their countries, and advocacy activities they run to improve the situation for HAE patients. There are nine videos with patient leaders/supporters from Belarus, the Czech Republic, Georgia, Hungary, Kazakhstan, Lithuania, the Netherlands, Russia and Ukraine.
Session 5 (Youngsters) presented by Nanna Boysen was an introduction to the community dedicated to young people living with HAE. Nanna shared the information about the role and the responsibilities of the HAEi Youngsters Community and invited everyone to join and become part of the group.
The 2020 HAEi Virtual Regional Workshop Central Eastern Europe and Benelux was launched on 12 December 2020. To make it happen, a total number of 22 videos had to be recorded, and with the translation into 11 languages, 242 file versions were produced in just 12 weeks. This workshop would not have been possible if it were not for the long and hard work of the entire HAEi Team.
We hope that this solution introduced by HAEi has allowed many new patients, caregivers and health care professionals from the region to learn more about the disease from the top HAE scientists, experts and patient advocates. The interest that accompanied this project and the feedback from patients show that great work was done.
