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. [...]
This input is dated May 2021 >> View content in Türkçe In brief Name for organization: Hereditary Angioedema Patients Solidarity and Support Association – HAE Turkey 60 members at 1 Jan 2021 Name of approved HAE treatments: Cinryze Bradikant (generic Firazyr) Icatin (generic Firazyr) Fun/interesting facts Belly [...]
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 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 [...]
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)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
gro.ieah@ofni
HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
