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.
