From Regional Patient Advocate Michal Rutkowski
I have successfully presented the Regional Advisory Group concept and Code of Conduct to all member organizations from Central Eastern Europe and Benelux. None of them had any doubts following the idea, and all countries declared participation in the project. Also, together with Advocacy Contractor Rashad Matraji, we have introduced the RAG concept to member organizations from the Middle East.
Since the last edition of Global Perspectives, the number of countries joining HAE International has expanded. The newest members from the regions I am responsible for are Bahrain, Iraq, Latvia, Saudi Arabia and Syria. In all of these countries there now is a local point of contact for HAE patients, caregivers and physicians.
As hard work pays off, the latest efforts resulting in the implementation of HAE International resources are as follows:
- Estonia, Kazakhstan and Latvia launched new websites hosted by HAE International
- The new, updated website for HAE Poland will be active shortly
- The HAE Emergency Card has been translated into Estonian and Latvian
- Furthermore, all of the resources available were introduced to more countries, and I expect them to implement soon.
Also, the ACARE project is more and more recognized in the HAE community in countries from my region, and I keep encouraging patients and physicians to create accredited angioedema care centers.
We all were very disappointed with the cancellation of the 2020 HAE Global Conference in Frankfurt, Germany due to the global pandemic situation. That is why it was even more appreciated to have the opportunity to follow the virtual conference. One of the highlights of the program was to celebrate hae day :-) 2020 jointly. The circumstances in which we found ourselves meant that each patient organization celebrated the awareness day separately. There has been many interesting initiatives in my region, for instance:
- In Belarus, the National Library in Minsk was illuminated with the hae day :-) logo
- In Poland, the patient organization launched the campaign “Fight for breath, withstand pain”, which aims to raise awareness about the disease, as well as ensure reimbursement for on-demand and long-term prophylaxis HAE treatments
- In Ukraine, an online press conference was held, and there were activities with the bloggers’ community.
