News from Central Eastern Europe and Middle East

From Regional Patient Advocate Michal Rutkowski

2025 highlights

Celebrating the 22nd anniversary of HAE patient advocacy activities in Poland and presenting at three Regional HAE Conferences. These events clearly demonstrated the crucial role patient advocacy organizations play in education and patients’ empowerment. These efforts culminated in the approval of reimbursement for a new prophylactic treatment, Orladeyo (berotralstat), now available to Polish patients as of 1 January 2026.

Strengthening advocacy activities in Saudi Arabia through successful collaboration and the launch of a new patient-focused website hosted by HAEi, improving awareness, education, and communication with the local patient community. Additionally, HAE Saudi Arabia actively attended and contributed to the ‘Stigma and Cultural Challenges’ panel discussion at the 2025 HAEi Regional Conference EMEA.

Further impact was achieved through collaboration with HAEi Member Organizations (MOs) in Armenia, Georgia, and Latvia. This partnership enabled the translation of HAEi resources into new languages, supported active participation in the 2025 HAEi Regional Conference EMEA, and, in Armenia, led to the successful launch of a C1-INH clinical trial, providing patients with access to life-saving therapy.

Hopes and goals for 2026

I aim to take full advantage of every opportunity to creatively support the development of the MOs I work with by providing strong leadership and the knowledge necessary to advocate effectively for people living with HAE. One of my key priorities is to identify patients in Moldova and support the establishment of a local patient advocacy group. I am determined to support patients and smaller HAEi MOs from Armenia, Bahrain, Iraq, Georgia, Jordan, Latvia, and Syria more effectively, as they work to strengthen advocacy efforts and secure access to modern HAE treatments. Another important goal is to further enhance collaboration with patients and healthcare professionals in Saudi Arabia through targeted awareness initiatives, including organizing an HAE Patient Meeting to mark hae day :-).