From Regional Patient Advocate Natasa Angjeleska

I am happy to share that almost all Member Organizations (MO) in the South Eastern Europe (SEE) region expressed their interest in participating in the 2024 HAEi Global Leadership Workshop in Copenhagen this year and applied for travel grants. We are all excited about the opportunity to meet again in person later this year.

More and more countries started translating the very informative booklets prepared by HAEi: in addition to the Slovenian, Croatian, and Turkish languages, Understanding HAE is being translated into Montenegrin, and Women with HAE is being prepared in Slovenian, Albanian, and Montenegrin languages. I believe both booklets will be used for many awareness, education, and advocacy purposes by the representatives from MOs. Social Media posts were translated into Greek and are being used by HAE Greece.

In cooperation with Michal Rutkowski and Deborah Corcoran, we agreed to implement the State of Management of HAE Study for SEE. I believe the data collected will assist all countries, specifically those who advocate for access to modern therapies like Bosnia and Herzegovina, Kosovo, or improved access for Albania and Montenegro. We will also highlight the improved quality of life of HAE patients when they have access to preventive treatment through case studies from N.Macedonia, Serbia, and Greece.

In a discussion with HAE Greece representatives regarding information about HAE and disability benefits in EU countries, I explained that each country has its own regulations. Most often, disability depends on the burden and the consequences that the condition has on patients, and an expert commission usually evaluates this burden. I was able to share information from Poland received from Michal Rutkowski. I had an earlier discussion on the same topic with HAE Croatia, and I was informed that they had implemented an introductory HAE session for some of the Croatian disability commission members in order for them to be better informed about the burden of the illness.

At the beginning of the year, Dr. Mensuda Hasanhodzic advised she managed to put branded icatibant for HAE patients in Tuzla Canton, Bosnia, on the hospital list for procurement. This will be the first official access to modern on-demand therapy in Bosnia. For the past 2 years, the practice relied on donations. The doctor is working with other hospitals to copy this example and enable patients’ access to the therapy.

I participated in the event marking Rare Disease Day on 29 February in Skopje, North Macedonia. I delivered a speech and also presented to different media about the challenges of life with HAE, as well as the need for on-time diagnosis, modern on-demand treatment and preventive therapies to be available to all patients.

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