South Eastern Europe

Natasa Angjeleska serves as the Regional Patient Advocate for HAEi in South Eastern Europe. She focuses her efforts on raising public awareness for HAE and educating patients and medical staff about HAE in South Eastern European countries. Natasa is an active member of the North Macedonia HAE organization and focuses her advocacy activities on improving the quality of life for patients in all areas: Health, education, employment, and social services. Her professional experience includes working on education and children’s rights. In addition, Natasa is assistant professor at a private university in North Macedonia’s capitol city, Skopje.

Contact Natasa by email: gro.ieah@akselejgna.n

2023 Highlights and Hopes for 2024

In the December issue of Global Perspectives, each of our Regional Patient Advocates (RPAs) has selected a few of the most important moments and successes from the past year, as well as their hopes for 2024 for their region.

Here you have the highlights from Natasa – and her hopes for 2024:

  • To see modern treatment options available to HAE patients in ALL countries.
  • To help more countries have access to preventative therapies according to individual needs.
  • To organize an HAE meeting for all SEE countries, in Skopje, North Macedonia.
  • To build stronger patient/caregiver communities advocating for improved quality of life for people with HAE.
  • To help two more patient organizations officially register in their countries.
  • To increase the use of available HAEi resources in all countries in my region.

– Natasa Angjeleska

News from Global Perspectives 2023

Published in Global Perspectives, October 2023

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 participants or sharing links for the agenda, accommodation, transport, etc., it was my pleasure to collect information from all Member Organizations and patient groups in the SEE region with messages from patient leads. These messages were shared with all the participants at the EMEA Conference. In addition, I also proposed a speaker representing N.Macedonia, Verche Jovanovska Jankovska, for the EMEA conference session for patient stories.

Understanding HAE was translated, approved, and launched in the Turkish language. It is also prepared as a print version that HAE Turkey will use in future meetings and activities.

I shared Social Media post text for translation purposes to HAE Greece so that they can use them and post them on HAE Greece social media channels.

I was able to assist with several individual patient requests. In this regard, I facilitated communication and provided information about some HAE resources (Emergency Card and HAE Companion app) to a caregiver from Germany who contacted me as his daughter would travel to Italy for summer vacation. I received a request to share information about hospital and Emergency Room sites from a patient who lived in Turkey and is now transitioning to live in London. I provided him with input from the HAEi website and suggested downloading the HAE Companion. I facilitated and assisted with information about HAE resources (HAE Companion, website, knowledgeable physicians, and hospitals) for a Romanian patient who will study in Holland. I’ve included my fellow RPA colleagues (Jørn and Maria) for the respective regions in all communications mentioned. 

I communicated with several pharma representatives regarding the request for their support to conduct a SEE meeting in Skopje with Member Organization leads and physicians.

We’ve all been ready and eager to participate in the 2023 HAEi Regional Conference EMEA, in Munich. The opportunity to meet face-to-face with so many patients, caregivers, physicians, and industry representatives is always emotional, motivational, and inspirational. It gives us more energy to “keep rolling” and work to identify new patients, support those we already know, create meaningful partnerships, and think about what actions can make our future brighter.

So Take Action and join us in all the initiatives we implement for improving the quality of life for all HAE patients, and take advantage of many of the existing HAEi resources for Member Organizations. Start with downloading HAE Companion, which allows you to access helpful information while traveling or in general, or HAE TrackR, which enables you to track your attacks and treatment easily and carefully manages your data so you can decide to share information about your condition that you can share with your physician.

>> Meet the Regional Patient Advocates

Published in Global Perspectives, June 2023

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 grants, and we are very excited about the opportunity to meet in person again in Munich, Germany, this year.

Many of the HAEi resources are used by the Member Organizations in South Eastern Europe, but there is always another opportunity. For example, HAE Albania and HAE Croatia have translated the new booklet “Understanding HAE” into their local languages and plan to use it in their upcoming activities. HAE Turkey has translated the HAE poster as well as HAE information cards into Turkish, which they will use for their posts and communication on social media. And as for HAE TrackR, it is now available in Slovenian – just as is the case with the Emergency Room poster. Some updates regarding the use of HAEi Connect have been provided to HAE Turkey, and HAE Greece has initiated the use of this tool for their organization as well.

HAE Albania consulted with me on their plan to collaborate with the Association of Allergologists in Albania for the register for HAE patients and some joint informative sessions on HAE.

I provided support to HAE Greece for the patient meeting in the country in which I participated and presented about the HAEi network, the decentralized approach in our operations as well as the many resources and tools that are available for patient groups and organizations.

I have had meetings with HAE Bosnia and Herzegovina and discussed their initiative to register the patient organization and considered all the options and needs to start the process of registration. I had similar discussions with patient representatives in Slovenia, and I hope to be able to assist them in the registration for their patient organization as well.

I have been informed that the Kosovo expert body has accepted the plan for the treatment of rare diseases, including HAE. The physician from Kosovo expects to have approved modern therapy this year.

Furthermore, I have held meetings with several pharma representatives active in South Eastern Europe upon their request or my initiative.

>> Meet the Regional Patient Advocates