From Regional Patient Advocate Natasa Angjeleska
It is always exciting to prepare and participate in HAEi’s meetings, but the Global Leadership Workshops that bring so many people connected by HAE in one place is one of the most exhilarating events. There was a large number of interested participants (Member Organization (MO) leads, board members, patients, and caregivers) who applied to come together for the 2024 HAEi Global Leadership Workshop (GLW) in Copenhagen, but also tremendous interest from many physicians to participate in the first ACARE Global Angioedema Forum 2024 (GAF), delivered in partnership with the ACARE network. The packed program for both events was zestful but inspiring. The buzz in the venue may seem confusing for outsiders. But for us, it was an opportunity to immerse ourselves in a way to consume as much information and meet with as many people as possible to make the most of the 2-day meeting.
During the breakout session, I was eager to get together with participants from SEE: Albania, Bulgaria, Croatia, Cyprus, Greece, Kosovo, Montenegro, North Macedonia, Serbia, Slovenia, Romania, and Türkiye. In June 2024, the MO leads participated in the first-ever State of Management of HAE in the SEE survey. The data was ready to be presented during the breakout. More than 70 representatives in these sessions had an opportunity to converse about the results presented. The group discussed the different advocacy opportunities where they could use this data. The State of Management results offer comparable data between various countries in different areas: diagnosis rates, HAE medications, challenges faced by people with HAE, knowledge of HAE by patients and physicians who treat HAE, and how people with HAE view the government health priorities. In addition, the State of Management presentation supports discussion based on cases showing the burden of not treating HAE: quality of life and cost.
After the presentation, we discussed topics suggested by the region MO leads before the GLW. The most exuberant discussion was about the opportunities to provide psychosocial support to HAE patients and caregivers. The focus was that the solution was not a MO-organized one-time event or a workshop (although helpful) but continuous support at an institutional level. Greece and Croatia shared good practices. A Bulgarian representative raised an interesting suggestion for organizing forum discussions on a regional level on different topics, such as parents of male or female patients with HAE – how to speak with kids at different ages on issues relevant to particular developmental stages or how to support your spouse, or how to deal with challenging discussions in relationships, etc. Many ideas were bubbling in the room, and we agreed to organize future online meetings to plan the delivery of some of these exciting ideas. After the GLW, I received many messages supporting the concept of an inter-regional meeting and expressions of gratitude for the opportunity to contribute to the meeting via the breakouts.
This GLW also introduced Masterclasses on different topics, using interviews between RPAs and representatives from different countries. I facilitated the Masterclass for Raising awareness through media and events with representatives from HAE Bulgaria Danail Dimov, and HAE Canada Michelle Cooper. At the Masterclass for Fundraising opportunities, HAE Macedonia president Natasha Jovanovska Popovska presented a case study from HAE Macedonia. HAE Türkiye representative Ersan Sevinç participated in a Masterclass about Effective advocacy strategies for local national impact. All these sessions offered so many different experiences and viewpoints, and GLW participants were highly engaged.
I truly hope each participant was inspired and energized to stay active and navigate the future for an improved quality of life for all people with HAE and their family members.