News from Central Eastern Europe and Middle East

From Regional Patient Advocate Michal Rutkowski

2024 Highlights

Celebrating 20 years of milestones in HAE advocacy, a highlight from this year was the 2024 HAEi Global Leadership Workshop. The meeting played a crucial role in cementing advocacy as the key to maintaining the progress we’ve made; there is always a risk of losing momentum if we don’t actively safeguard hard-won gains for the future. To ensure continued success, it’s essential to have motivated Member Organizations (MO), dedicated patients and caregivers, expert physicians, and committed industry partners working together.

Strengthening advocacy in the Middle East through strategic collaboration with HAEi Member Organizations in the region has delivered many advances. It has been truly inspiring to witness the significant progress in awareness, patient numbers, access to treatments, and physician engagement in HAE care across the Middle East over 2024. Ongoing collaboration with MOs in the region, along with the implementation of key HAEi resources, has brought the HAE community together, highlighting shared challenges and diverse needs.

Two major youth events organized by HAEi MOs in Czechia and Poland were pivotal in engaging young people with HAE advocacy. As the future of the community, it’s essential that young people are fully informed about all aspects of HAE and become passionate, knowledgeable advocates. Their role will be to share HAE experience with future generations while ensuring continued access to and reimbursement for HAE treatments.

Hopes for 2025

  • To foster greater creativity in collaboration with HAEi MOs, enabling them to implement effective advocacy resources that drive further success and improve the local situation for patients.
  • To establish contact with patients in countries within my region who are not yet members of HAEi and to continue to support the growth of existing MOs. Also, more tools and resources should be implemented by HAEi.
  • To support establishing 2 more HAEi MOs in my regions and several ACARE centers. Also, to help approve access to modern HAE treatment options in countries where discussions with health authorities are currently in progress.