I am so happy to catch up with you again and share what happened over June, July, and August. It has been a hectic period, full of advocacy activities and crucial successes.

First, I would like to share with you some wonderful news about the situation of HAE patients in my home country, Poland. I can proudly announce that the first preventative therapy has been approved and reimbursed in Poland. This is a great and unprecedented achievement of the entire Polish HAE community, the patient organization, and expert physicians, who together with Takeda for over 18 months undertook various activities to raise awareness of the need to reimburse long-term prophylaxis. You can read more about this under “Poland” in the section with news from the national organizations. 

June was dominated by activities focusing on preparations for the HAEi Virtual Workshop for the Middle East, North Africa, and Sub Sahara Africa. Together with other Regional Patient Advocates and the HAEi Team, I recorded video presentations with representatives of HAEi member organizations and physicians from the regions. Also, we edited all the videos and prepared them in a form to be sent for transcript and translation. One of the elements of preparations for the virtual workshop is the launch of a website dedicated to patients from the Middle East and North Africa. We expect to have this website ready before the workshop launches.

Furthermore, in June, I continued my bi-monthly zoom meetings with my member organizations. I had the opportunity to catch up with patient leads from Hungary, the Netherlands, Kazakhstan, Russia, Belarus, Georgia, and Ukraine. Moreover, I enjoyed attending the Takeda Gulf Countries and Lebanon Patient Webinar, where I introduced HAEi and its values for the Global patients’ community. And finally, in June, the HAE TrackR app became available in Polish.

On 8 July, I was privileged to attend the Ukraine and CIS cluster HAE Patient Advisory Board organized by Takeda, where I shared the experience and achievements of the work done by the patient organizations in Belarus, Kazakhstan, and Ukraine. Plenty of great initiatives have been organized in these countries, and many more are to come. Also, in July, I attended virtual meetings with BioCryst Pharmaceuticals to discuss the needs of the patients’ community in the Middle East. 

In July and August, I was in constant contact with the Ministry of Health in Poland. I participated in meetings with the Deputy Health Minister and provided materials and data relevant to approval for long-term prophylaxis for HAE patients.    

As always, I constantly work on implementing HAEi resources and projects in the countries I cover. In the recent period, I have focused on the HAE TrackR app and HAEi Advocacy Academy – and I hope that these resources can be valuable assets for all users.