From Teja Iskra Cigljar, HAE Slovenia

I would like to share with you some of the activities carried out by the HAE Patients’ Association Slovenia in our country this year. At the beginning of February, we were invited to a press conference, which is organized every year on the occasion of Rare Disease Day by the Association for Rare Diseases of Slovenia and is intended for healthcare professionals and the media. The live broadcast is available through the Slovenian Press Agency. This year’s theme was Women with Rare Diseases, and there we presented our booklet, Women with HAE. It was previously translated into Slovenian and printed. Since we aroused interest among patients with two different rare diseases, we were interviewed for Jana magazine a few days later. It is an established family magazine that later published an honest article about two patients with rare diseases and their fight against the disease. At the end of February, we attended the 11th national conference on the occasion of Rare Disease Day, organized by the Association for Rare Diseases of Slovenia and the Ministry of Health of the Republic of Slovenia. The event took place in Brdo pri Kranju.

On May 17th, we had the first meeting of HAE patients in Slovenia under the auspices of HAE Slovenia. There weren’t many of us, but it was just enough to start. We opened some interesting ones and tried to solve problems as they arose. Since we have a small country with only two million inhabitants, there aren’t many HAE patients. According to the information so far, there are about 30 of us. Therefore, we can connect with some of them personally and thus solve some of the problems that HAE patients face.

We also recently attended a meeting with patients in the neighboring country of Croatia, where they have an annual meeting of children with HAE. It was very educational and enjoyable, as always when we meet friends from neighboring countries.

A few days ago, we also returned from the 2025 HAEi Regional Conference EMEA in Rome. Such meetings always enrich us, both with new knowledge and new acquaintances, as well as with news in the field of HAE treatment. And they empower us.

We are also preparing a video, intended for the education of nurses, about the work of HAE Slovenia.

We have no shortage of work, challenges, and ideas, so we are bravely moving forward to new victories.

Photo of the press conference table: Miran Juršič