News from South Eastern Europe

From Regional Patient Advocate Natasa Angjeleska

Supporting MOs in my region to develop, finalize, and launch a range of resources was a major focus at the beginning of this year. Having accessible information in local languages is important for improving awareness and understanding of HAE within local communities.

Online visibility

HAE Croatia, HAE Macedonia, and HAE Slovenia are currently working on improving their websites hosted by HAEi, while the HAE Cyprus patient group initiated the creation of its first website. HAE Montenegro successfully launched its website, which is already being used to increase the organization’s visibility by sharing updates on past, current, and upcoming activities, as well as educational materials such as Understanding HAE and Women with HAE.

Educational resources

With HAE Romania, the Emergency Department (ED) Poster was translated into Romanian and will be distributed across medical facilities nationwide. The booklet Understanding HAE is now available in Macedonian, Montenegrin, and Romanian, and will be used for educational and awareness activities connected to hae day :-). In addition, Women with HAE has been translated into Montenegrin and uploaded to the HAE Montenegro website.

With the launch of the #active4HAE campaign, all MOs were reminded of the opportunity to participate through the campaign website and the HAE Companion platform. HAE Macedonia and HAE Croatia also shared information about their hae day :-) meetings, which are now featured in the official hae day :-) calendar.

I continued to communicate with pharmaceutical representatives to explore new treatment options for patients in underserved countries, including Albania, Bosnia and Herzegovina, Montenegro, and Kosovo. Discussions also focused on identifying alternative treatment options in North Macedonia and Serbia following the withdrawal of one acute treatment from the European market.

Together with HAEi’s Director, Research, we are working towards the State of Management of HAE in SEE report being publicly available on the HAEi website as a reference resource for current and future advocacy efforts. Following the BEACON Conference in Sofia, I was invited to contribute to the publication of an article based on the conference outcomes, which will include key HAE statistics collected through the State of Management survey in SEE countries. We know that publishing the State of Management report through the HAEi platform will be a valuable opportunity to strengthen regional visibility and collaboration.

HAEi RPAs often work together to share experiences across regional borders. Through HAEi’s RPA, Maria Ferron, I was invited to share my experience as a caregiver with a young advocate from Spain who is currently implementing his HAEi LEAP project. I collaborated with Fabio Lagunar Sanz to create a video that has now become part of his series featuring stories from members of the HAE community. The video, subtitled in both English and Macedonian, is available on YouTube as part of his planned collection of ten stories.

HAEi resources and support continue to be widely used by SEE MOs, strengthening their awareness and advocacy efforts, supporting education for patients, caregivers, and the general public, and encouraging active involvement in policy dialogue with decision-makers.