News from South Eastern Europe
From Regional Patient Advocate Natasa Angjeleska
2024 Highlights
The South Eastern Europe (SEE) HAEi meeting: PROVIDING BETTER CARE FOR HAE FAMILIES held in Skopje, North Macedonia, 31 May – 1 June gathered representatives (patients, caregivers, and physicians) from 9 countries: Albania, Croatia, Greece, Kosovo, Montenegro, North Macedonia, Slovenia, Serbia and Turkey. It was a remarkable opportunity to see the progress each country has made from the very first SEE gathering back in 2016 in terms of HAE awareness and advocacy activities, reaching out to more HAE patients, having more physicians interested in HAE, as well as increased use of HAEi resources.
For the State of Management of HAE study in SEE, data collected from Member Organization (MO) leads in June 2024 were analyzed and presented to more than 70 participants during the 2024 HAEi Global Leadership Workshop (GLW) and at a high-level meeting with officials in Albania. The GLW provided an opportunity to converse and discuss the different opportunities where the data can be used for advocacy, especially because it offers comparable data between countries in different areas: diagnosis, treatment, care, quality of life, and access to medicines.
I was delighted to see increased interest from MOs in translating the resourceful booklets ‘Understanding HAE’ and ‘Women with HAE’ in local languages and using different HAEi resources: HAE TrackR, HAEi Connect, and FocalPoint.
Hopes for 2025
- To help MO leads and members keep up the inspiration and energy to stay active and navigate the future for improved quality of life for all people with HAE and their family members.
- To assist more countries with access to preventive therapy according to individual needs.
- To facilitate and build a stronger and more vibrant HAE patient and caregiver community, advocating for improved quality of life in SEE.
- To support at least one more patient organization officially registered in the region – in Kosovo.
- To support different hospitals/clinics in becoming members of the ACARE network.
- To gather at the second HAEi Regional Conference EMEA in 2025.