From Regional Patient Advocate Michal Rutkowski
Despite the difficult global pandemic situation, I hope you are keeping safe, healthy and have been already vaccinated.
Firstly, happy birthday to HAE Belarus and HAE Kazakhstan, who recently celebrated the 4th and 3rd anniversaries. The organizations and patients strive to have the first modern HAE treatment reimbursed, and the latest advocacy activities make this possible more than ever before. Also, HAE Poland was celebrating 16 years of advocacy activities, and access to the first preventative HAE medicine has been the icing on the cake.
September, October and November have been incredibly hectic, and I have so many things to share with you.
I was privileged to organize and attend numerous virtual meetings with patients’ organizations from Belarus, Egypt, Georgia, Hungary, Iraq, Jordan, Kazakhstan, Kuwait, Lebanon, Lithuania, the Netherlands, Qatar, Poland, Russia, Saudi Arabia, the United Arab Emirates, and Ukraine. Furthermore, I was honored to present at the HAE Ukraine Virtual General Assembly as well as the HAE Belarus and HAE Hungary Virtual Summits, sharing HAEi’s experience and motivation with fellow patients. As if this was not enough, I had online meetings with individual HAE patients and caregivers from Belgium and Iran, participated in the Takeda HAE Global Expert Patient Council meeting, and took part in the Takeda Business Review online meeting.
Together with the HAEi Team, we launched the 2021 HAEi Virtual Regional Workshop Middle East, North Africa, and Sub Sahara Africa. The enormous effort of all people involved in the preparations resulted in the outstanding educational virtual event available in Arabic, English, and French. I highly recommend you watch the workshop here. Jointly with my fellow RPA Maria Ferron, we launched the HAEi Regional Website Middle East & North Africa – please have a look at https://mena.haei.org.
Speaking of the Middle East countries, it should be mentioned that the following on-demand therapies have recently been registered: C1 Inhibitor esterase (Cinryze) in Egypt and the United Arab Emirates, and Icatibant (Firazyr) in Kuwait, Oman, Saudi Arabia, and the United Arab Emirates.
In recent months, I have also established in-depth contact with healthcare professionals and HAE patients from Iran. The representative of Immunology, Asthma, and Allergy Research Institute (IAARI) at Teheran University of Medical Sciences has joined the HAEi Regional Medical Advisory Panel (RMAP) for the Middle East, which is extremely important for this RMAP structure and work. I look forward to further mutual collaboration.
More RMAP panelists have confirmed their availability in their respective regions. So far, there are 16 HAE expert advisors from 15 countries within the RMAP for Central East Europe and Benelux and 11 HAE expert advisors from 11 countries within the RMAP for the Middle East.
The ACARE project is growing fast, and so far, centers have been established in these countries from my regions: Georgia, Hungary, Kazakhstan, Saudi Arabia, Kuwait, the Netherlands, Oman, Qatar, Poland, Russia, and the United Arab Emirates.
I am delighted to inform you that the HAEi electronic patient diary HAE TrackR now is also available in Arabic, Polish and Ukrainian. Soon, we can expect more languages to come. Also, HAEi Advocacy Academy is available in any language from my regions, and more countries have been logging in to use Advocacy Academy “exclusive access”.
I successfully established contact with the rare disease organization from Luxembourg (ALAN – Maladies Rares Luxembourg) and had a videoconference with its Director, Daniel Theisen. Also, I identified centers in Luxembourg where HAE patients are treated. Hopefully, it will help identify more HAE patients in this country and increase awareness among health care professionals.
Finally, after 17 years of service as the member organization patient lead and later as the President of HAE Ukraine, Helena Mykal decided to step down, which happened at the HAE Ukraine Virtual General Assembly on 2 October 2021. Many of you know Helena from HAEi events held over the years. On behalf of myself and HAE patients from Central Eastern Europe, I would like to thank Helena for her dedication, professionalism, and expert knowledge in her advocacy activities for the benefit of HAE patients. Also, I would like to introduce to the international community the new President of HAE Ukraine, Natalia Formaniuk.
