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.
