News from South Eastern Europe

From Regional Patient Advocate Natasa Angjeleska

Countries in my region supported hae day :-) from the start of the HAEi #active4HAE activity challenge through to the end of May. Member Organizations (MOs) in Turkiye, Croatia, North Macedonia, Serbia, and Greece organized events to raise awareness and advocate for better care for HAE patients, such as meetings of patients and physicians, public gatherings with joint walks or running, and school sports competitions.

Regional Patient Advocates (RPAs) can support our countries through participation at their patient’ and physicians’ meetings. I was delighted to join meetings in Croatia in mid-May and Turkiye at the end of June to meet new patients and physicians, and to hear presentations on various activities and results that MOs in both countries have accomplished. These kinds of meetings and face-to-face interaction always bring inspiration and motivation to share different resources and opportunities to cooperate and support. In both meetings, I shared country-specific and comparative data regarding access to medications as well as the influence of HAE on patient quality of life from the HAEi 2024 State of Management survey conducted in South Eastern Europe. The presentation also included a case study to showcase differences in QoL where patients have and do not have access to modern medications, as well as a patient experience where their QoL improved considerably from being on a preventive treatment.

Regarding HAEi tools and resources, we now have “Women with HAE” available in the Romanian language, all SEE countries now use Focal Point, and the Turkish translation option was approved to be added to the hae day :-) web page as well as HAEi Advocacy Academy (previously, the automatic translation wasn’t of high enough quality to support Turkish participants).

For other countries in my region, we continued to support MOs on their plans and activities in 2025. I met with a new patient and caregiver representative from Bosnia and Herzegovina and provided details about opportunities to support registering a MO. We also discussed possibilities for access to modern medicines for patients and improving the care for HAE patients. They will participate in the 2025 HAEi Regional Conference EMEA in Rome to hear different experiences from other countries and meet with more MO representatives. During an online meeting with the new board members of HAE Greece, I heard about their plans for this year, including a 24-hour telephone line to get support from experts if you live in Greece, or are just visiting, and you need to receive medication and/or any HAE-related information.

A key aspect of the RPA’s role is to share information across our networks, whether MOs or physicians. I have promoted ACARE educational webinars with doctors in the SEE region and shared the HAEi Regional Medical Advisory Panel (RMAP) questionnaire with the SEE RMAP.

As part of the resources HAEi promotes to support children, you can find the children’s books I’ve written about a boy with HAE who gets help from a Talkative Little Balloon.

The third book, “The Rare Boy on a Race: I swell but you cannot tell” is now available in Spanish. As part of the activities to mark hae day :-) I was honoured to speak about the inspirational background of writing children’s stories and the significance of having children’s literature and this kind of resource available for children with HAE, at a webinar organized by a Spanish caregiver who works at the University of Alicante and is a member of AEDAF.

Reading the book with children makes a good starting point for a discussion about what HAE is all about. You can find the Rare Boy and the Talkative Balloon series, and other wonderful resources for children, on the HAEi Youngsters’ website.