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 there has been a huge increase in activity and movements after the workshop. I would like to share a few words about the break-out session with participants from my region. First, they all appreciated being part of this event, and especially for those participating for the first time, it was a mind-blowing experience as they could feel the power of our global organization. They are delighted to be part of it. Another good opportunity was to discuss among ourselves the challenges and successes that have happened in the past two years after our latest regional conference in Skopje, North Macedonia. A lot has improved in terms of diagnosis and access to treatment, for example, in Serbia and Montenegro. Most importantly, having access to preventive therapies in these countries, as in Serbia, Greece, and North Macedonia, is very valuable and motivating for others. There were discussions and interest shown for different HAEi resources, and it was a busy period to meet the needs of all interested in translating and using the resources like the Emergency Room poster, social media cards, the “Understanding HAE” booklet, Event Zoo, etc.
I have written to the Member Organizations’ representatives about the HAEi LEAP program, encouraging them to find out if there were youngsters in their country who would apply and be part of this opportunity for young HAE patients, caregivers, family members, and the patient organization.
Furthermore, I have emailed all Member Organization representatives offering them to translate the “Understanding HAE” booklet. HAE Albanian informed me that they had it translated immediately, as it was helpful for them.
Ersan Sevinc from HAE Turkey has asked me to send him templates for translating social media cards, Emergency Room posters, and ”Understanding HAE”. He is also communicating with the HAEi Staff regarding redesigning the Turkish website and using Event Zoo for upcoming online and in-person patient meetings.
Teja Iskra has requested to translate the Emergency Room poster into Slovenian. She also shared the news that she is very encouraged to start the formal registration of the patient association.
In October 2022, our friends in Albania had their first activity as a patient organization advocating for therapies for HAE patients. The event was organized as a round table discussion with patients and representatives of the Ministry of Health. They also had media appearances on some national TV channels for the first time. At one of those hostings, I was invited and contributed to the discussion about the importance of treatment options for Albanian patients. Also, I shared experiences from other countries in the region.
President Mihaela Shogoric from HAE Croatia reports a very successful meeting held in Tuheljske Toplice. There were lectures from Croatian physicians and interactive discussions between patients, caregivers, and physicians. Mihaela also invited physicians and patient representatives from Serbia and Bosnia and Herzegovina to the event, and they all shared very positive impressions. Mihaela has submitted to me five new hospitals to be added where patients with HAE can ask for assistance and medication for HAE: Two in Split, one in Zagreb, one in Rijeka, and one in Osijek. All these places are known and visited by tourists, so their contact information can now be found on the HAEi website.
On 4-5 November 2022, HAE Macedonia organized a meeting for HAE patients in Skopje. The meeting held at Hotel Solun was attended by 20 patients and caregivers, around 80 percent of the HAE population in the country. Prof. Vesna Grivcheva Panovska, MD, took part in the meeting, sharing details about the ACARE center in North Macedonia, which was certified in May 2022. She also elaborated on the future functioning of the center. Patients expressed their interest in the center, especially regarding genetic testing. HAE Macedonia President Natasha Jovanovska Popovska talked about the experience of the HAEi Global Leadership Workshop, explaining the treatment options and the new HAEi concept regarding future workshops and conferences. I shared with the patients the results from a quality-of-life survey I carried out for HAE patients in North Macedonia. This data will be instrumental in future advocating and lobbying with the Ministry of Health. The overall impression from this meeting is that patients could share their experiences in a relaxed and friendly atmosphere. They were able to learn about their rights and expectations. Some patients are too relaxed regarding their condition, while others are too terrified. I believe we were able to assure them that while they should take their situation seriously, they should also try to control it to the best of their abilities and diminish its negative effect on the quality of their lives.
Rushit Ismaili in Kosovo had a seat on the organizing committee of a conference for family doctors in Pristina and invited me to participate at the conference and present about HAE. As a mother and caregiver to an HAE patient, I told my personal story and gave facts about what HAE is, its symptoms, triggers, and medications. Also, I presented about HAEi, the support we provide to patients and caregivers, and our cooperation with physicians, researchers, and pharmaceutical companies to improve the quality of life of people with HAE. Dr. Ismaili will be in charge of the courses for the professional development of physicians in Kosovo, and he plans to have HAE as one of the topics for education. Therefore, I shared the “Understanding HAE” booklet with him so he could use it for educational purposes.
