This input is dated May 2021 >> View content in Македонски In brief Name for organization: HAE Macedonia 17 members at 1 Jan 2021 Name of approved HAE treatments: Ruconest Berinert Firazyr Fun/interesting facts Ohrid Lake is the oldest, and one of the deepest, lakes in Europe [...]
From President Natasha Jovanovska Popovska, HAE Macedonia: HAE Macedonia celebrated the 10th anniversary of hae day :-) by promoting a video that carried a message with the motto of the awareness day, “Many faces one family”. The video was produced by the dance studio Eureka, which manifested great effort and enthusiasm. The video featured [...]
On 6 March 2021, I was able via Zoom to address the participants at the annual patient meeting in Croatia and congratulate them on their engagement and activities even in a COVID year. I held a meeting with the Cyprus patient group on 25 March 2021, during which I introduced the participants to the [...]
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 [...]
From Regional Patient Advocate Natasa Angjeleska Alongside the President and the Vice President of HAE Macedonia and members from the Rare Disease Alliance, I worked on organizing a public event with famous child actors, a singing group, band, and dancers on an event for Rare Disease Day. Unfortunately, the event had to be canceled under [...]
From Regional Patient Advocate Natasa Angjeleska In Croatia, I have been assisting and advising the national patient group, which was officially founded on 29 February. HAE Croatia drew some media attention and appeared on several TV shows to explain HAE. They also held a session on Rare Disease Day, which was attended by physicians 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 [...]
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.
HAE International (HAEi)
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HAE International (HAEi)
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