From Regional Patient Advocate Natasa Angjeleska This summer was not only for taking time to rest and vacation but also for finalizing preparations and facilitating Q&A regarding the 2023 HAEi Regional Conference EMEA with Member Organization leads, individual patients/caregivers, physicians, and pharma representatives. Although I was busy sharing demands for invitation letters for some [...]
From Regional Patient Advocate Natasa Angjeleska Most of the focus at the beginning of the year was on the announcement of the 2023 HAEi Regional Conference EMEA and applications for travel grants for interested participants. We have a relatively large group of participants from South Eastern Europe that have applied for and received travel [...]
From Regional Patient Advocate Natasa Angjeleska According to the representatives from countries in my region, the most important event of 2022 is definitely the HAEi Global Leadership Workshop held in Frankfurt, Germany. There was a lot of positive energy, and it was terrific to meet face to face. All the sessions were excellent, and [...]
From Regional Patient Advocate Natasa Angjeleska I have had intense communication with the Member Organizations making sure that they were aware of the HAEi newsletter announcing the Global Leadership Workshop in October 2022. In addition, I had continued contact with some of them about the need for translation at the workshop. I’m happy that [...]
From Regional Patient Advocate Natasa Angjeleska The first preventive treatment started for one boy in North Macedonia, suffering from HAE attacks every four to five days. Thus far, the young patient responds to the new treatment very well, with no breakthrough attacks. HAE Turkey has held a very successful meeting in Denizli with physicians [...]
From Regional Patient Advocate Natasa Angjeleska In October, I was focused on stirring up the countries’ interest in HAEi resources. I invited patient representatives to a member organization online meeting for my region, where we had an opportunity to discuss the situation regarding access to therapies, new initiatives, challenges etc. in the past period. [...]
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 Eλληνικά In brief Name for organization: HAE Greece 40 members at 1 Jan 2021 Name of approved HAE treatments: Berinert 1500MG Firazyr Ruconest with a special prescription Takhzyro with a special prescription Berinert 3000 with a special prescription [...]
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 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 [...]
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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