I have informed the patient representatives in my region about the HAE TrackR app and sent them the files for translation. So far, we have the app translated into Serbian and Turkish – and expect to have it available in Macedonian very soon. HAE Greece has received its registration documents and is now an [...]
This input is dated May 2021 >> View content in hrvatski In brief Name for organization: HAE Croatia HAE Croatia currently has around 30 members Name of approved HAE treatments: Firazyr Ruconest Berinert Cineryz Danazol Tranexamic acid Fun/interesting facts Croatia coastline on the Adriatic Sea is 1777km [...]
From President Mihaela Šogorić, HAE Croatia: On 6 and 7 March 2021, the HAE Croatia organized an assembly and a meeting in Rijeka. A report for the work of the association in the past year was presented to the participants. Doctors dealing with HAE were invited to the meeting and gave lectures. Ljerka Karađa [...]
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 [...]
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 President Mihaela Šogoric and Željka Kardum, HAE Croatia Upon the initiative of a group of patients in Croatia, the founding assembly of patients with HAE was held in the DVD home in Semeljci on 29 February 2020. The need to establish an association was recognized for a longer period because of the problems with [...]
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: 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 [...]
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 [...]
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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