News from Central Eastern Europe and Middle East
From Regional Patient Advocate Michal Rutkowski
Hello everyone, I hope you have had a good start to 2025!
The past few months were an eventful time filled with activities aimed at supporting Member Organizations (MOs) and patients across the Central Eastern Europe and Middle East regions.
On 9 February, I participated in the HAE Patient Meeting in Abu Dhabi, UAE, facilitated by HAEi. The agenda covered key topics that addressed both medical and everyday challenges faced by the HAE people. Also, the available HAEi resources and future events were discussed. The most impactful part of the agenda was the patient stories, where attendees shared their experiences and lives with HAE. I would like to thank Dr. Marilyn Karam from the Saudi German Hospital in Dubai, the keynote speaker, and Shradha Singhania, the leader of the local HAEi MO, for their contribution to making this meeting possible.
Additionally, over the weekend 8-9 February, I attended the 4th Emirates Allergy and Clinical Immunology Conference in Abu Dhabi. This event offered an excellent opportunity to network with expert physicians from the region. The discussions will help shape future advocacy efforts.
Beyond in-person meetings, I conducted virtual catch-ups with the patient leads of several HAEi Member Countries, including Armenia, Czech Republic, Hungary, Kazakhstan, Latvia, Saudi Arabia, UAE, and Ukraine. These meetings served as an opportunity to discuss the unique challenges each country faces and to offer guidance on current issues and HAEi tools and resources.
In January and February, I engaged with industry partners from CSL Behring, KalVista, and Takeda, through virtual meetings to discuss local and regional issues. These discussions provided insights into upcoming treatments and research initiatives relevant to HAE patients.
A major focus for me has been on HAEi Resources. We keep improving the digital presence of our Member Organizations through HAEi Hosted Websites. In collaboration with HAE Saudi Arabia, we are working on a new, advanced website, which is now in the IT phase. Simultaneously, work has begun on a new website for HAE Qatar. Language accessibility continues to be a priority, ensuring that essential resources are available to more patients. The “Understanding HAE” guide is now available in Persian, and the “Women with HAE” booklet has been translated into Russian. Additionally, we have started translating the Brady Club Activity Book into Arabic for our Middle Eastern MOs.
In Poland, my home country, I assisted in organizing a regional patient meeting that brought together nearly 100 attendees, including patients, caregivers, healthcare professionals, and industry partners. This event, along with two others planned for 2025, celebrates the 20th anniversary of HAE Poland’s official registration and highlights the importance of community engagement in driving reimbursement for modern HAE therapies.