From Regional Patient Advocate Michal Rutkowski
I am excited to share with you that after a long pandemic period, I had the pleasure of attending a patient meeting in person organized in Yerevan in June by HAE Armenia. It was so amazing to meet local patients, caregivers, and HAE expert physicians and to focus on what we can do together to bring access to HAE medicines to Armenia.
However, this was not the only personal meeting in which I had the opportunity to participate. Also, I had a fruitful meeting with our Member Organizations from Belgium and the Netherlands. Furthermore, I met with local HAE experts in Belgium, Prof. Dr. Cedric Hermans, and Prof. Dr. Didier Ebo, to discuss how HAEi can help in awareness, advocacy, and access to HAE therapies. In my activities, I focused on all Benelux countries, also identifying specialists in Luxembourg.
I have put much effort into activating patient advocacy in Lithuania, Latvia, and Estonia. These activities resulted in an HAEi Patient Meeting in Vilnius, Lithuania, in September. It was the first-ever meeting of this kind to take place in the country, where patients, family members, and physicians gathered and shared experiences. I would like to thank Prof. Dr. Laura Malinauskiene and Dr. Edita Gasiuniene for their commitment and support to making this event possible. However, we are not done yet, as on 5 November 2022, another HAEi Patient Meeting is going to take place, this time in Riga, Latvia. And if that is not enough for you, currently, we are trying to allocate a date for a patient meeting in Tallinn, Estonia, in the first quarter of 2023.
In June, in Warsaw, Poland, I organized an HAE Workshop dedicated to patients and caregivers. It was the first in-person meeting of HAE Poland in 28 months. The organization will soon present the next meetings in Wroclaw and Krakow to be held before the end of this year.
After many weeks, I finally managed to hold a zoom meeting with HAE experts from Iran, Prof. Dr. Mohammad Reza Fazlollahi, and his team. I am happy to inform you that the Immunology, Asthma and Allergy Research Institute (IAARI) in Teheran is an applicant center for the ACARE network – and hopefully a member soon. Furthermore, C1-INH is currently available in Iran under relatively favorable conditions. I will keep working with IAARI and HAE Iran on different projects and resources.
Over the last quarter, I organized and attended numerous individual virtual meetings with patient organizations from Armenia, Belarus, Egypt, Estonia, Georgia, Hungary, Russia, Slovakia, and Ukraine, as well as exchanged emails with many more. Also, I participated in videoconferences with manufacturer representatives from BioCryst Pharmaceuticals, KalVista Pharmaceuticals, Pharvaris, and Takeda.
I would also like to mention our success with the HAEi resources, as the HAEi Emergency Room Poster was translated into Georgian and Slovak. HAEi also produced posters and sent them to Prof. Maia Gotua in Tbilisi so that she could distribute them among local emergency room departments and hospitals.
Furthermore, I strengthened the communication with Member Organizations and HAE expert physicians from the Middle East. With my colleagues from the HAEi office, I burned the midnight oil to bring the Member Organization’s leadership teams from the region to Frankfurt, Germany, to attend the 2022 HAEi Global Leadership Workshop.
