From Ivana Golubović, HAE Serbia 2020 has been a challenging year for our HAE community. Delays in the supply of our medicines, limited access to hospital care, etc. However, it also gave me the impression that rare disease patients mentally handled the COVID-19 situation much better than the rest of our otherwise healthy community. [...]
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 participated in Takeda’s External Stakeholder meeting on 13 October 2020 upon invitation from the Head of the Takeda representative office in Belgrade, Aleksandar Bjelski. I was one of two patient representatives invited to speak about living with HAE, as a caregiver, but also as a patient [...]
From Regional Patient Advocate Natasa Angjeleska I have had continuous communication with patient organizations, pharma and physicians in the past period. Most frequently the newly established patient organization from Croatia informed me and consulted about their plan for activities in the next couple of months, including children’s gathering and activities for the youngest members [...]
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 [...]
After four years as President of HAE Serbia Ivana Golubović has stepped down. New President is Jovana Cvetkovic.
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 [...]
From Regional Patient Advocate Natasa Angjeleska: In February 2019 I participated in the annual patient meeting of HAE Serbia delivering a presentation entitled ”The incredible power of advocacy”. The program also included addresses from two physicians about the therapeutic options for HAE and patients heard about the bureaucratic procedures regarding receiving medication.
By Natasa Angjeleska, HAEi Regional Patient Advocate South Eastern Europe Before being nominated as HAEi Regional Patient Advocate for the South Eastern Europe countries (SEE), I established communications through my colleagues from HAE Macedonia with some of the HAE patients in this region. We were motivated by the will to meet with patients from neighboring [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
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