In the course of December 2020 and January 2021, I held online meetings with patient representatives from Montenegro, Greece, Albania and Bosnia and Herzegovina. Some of the patients wanted to hear details about the vaccines for COVID-19 because they feel insecure about the safety of people with HAE. I have re-shared the link to [...]
From Regional Patient Advocate Natasa Angjeleska I have had communication via e-mail with the patient groups and the patient organizations in my region to explain to them the establishing, the aim and the operation of the Regional Advisory Group (RAG) in Southeastern Europe. I requested the nomination of an Advisor from each country and [...]
By Natasa Angjeleska, Regional Patient Advocate for South Eastern Europe: We successfully managed to realize the fourth regional HAE International South Eastern Europe workshop at the Marriott Hotel in Skopje, North Macedonia 27-29 September 2019. We had 85 participants representing 11 countries from the region, including one guest physician coming from Belarus that expressed interest to join us. The composition of [...]
An article about HAE has been published in a media in Slovenia in which Teja Iskra from HAE Slovenia discussed her experience with HAE and professor Mitja Kosnik from the Golnik Clinic explained about the disease genetics and treatment options.
From Regional Patient Advocate Natasa Anglejeska: In Slovenia, there have been some barriers preventing a patient organization specifically for HAE being registered. As a result, the patient representative Teja Iskra is in contact with rare diseases societies and is hoping to have HAE officially supported by one of these organizations. Teja Iskra was also invited [...]