From Regional Patient Advocate Michal Rutkowski
It was a privilege to see you in person again in Frankfurt, Germany, at the 2022 HAEi Global Leadership Workshop! It’s incredible how powerful and inspirational a patient gathering can be, and to see all the friends after such a long time is always additional value.
Much of my time in September was dedicated to the workshop, as many Member Organizations requested assistance regarding their attendance. Hard work pays off, and that’s precisely what happened. The number of participants from the countries I am responsible for was significant.
As the global pandemic situation is better than a few months ago, I have had the opportunity to organize and participate in patient meetings on behalf of HAEi. The focus has been increasing awareness among patients and caregivers in the Baltic states. Therefore, HAEi held two educational meetings respectively in Vilnius, Lithuania, in early September and Riga, Latvia, in early November. It is important to say that both were very successful and were the first of this kind of meeting to be organized locally. I would like to express my gratitude to all the participants, including local HAE expert physicians: Prof. Laura Malinauskiene and Dr. Edita Gasusiene from Lithuania, as well as Prof. Natalja Kurjane, Dr. Signe Purina and Dr. Adine Kanepa from Latvia. The patient meeting in Tallinn, Estonia, is planned to be held in the first quarter of 2023, so stay tuned.
Also, over the recent months, I have supported HAE Poland in organizing local workshops dedicated to HAE families. In late September, a patient meeting was held in Wroclaw, and in mid-October, another meeting took place in Krakow. The total number of participants at these meetings was 62. In mid-December, one more gathering took place in Rzeszow dedicated to patients and their relatives.
As always, I have had numerous in-person and virtual meetings with HAE stakeholders:
- Member Organizations and patients from Armenia, Belarus, Belgium, the Czech Republic, Egypt, the Netherlands, Qatar, Oman, Poland, the United Arab Emirates, and Ukraine,
- HAE expert physicians from Armenia, Georgia, Latvia, Lithuania, Qatar, Oman, Poland, Saudi Arabia, and the United Arab Emirates,
- HAE pharmaceutical representatives from Astria Therapeutics, BioCryst, CSL Behring, KalVista, Pharming, Pharvaris, and Takeda.
Also, I am engaged in the HAEi LEAP project, the new educational program for youngsters, where I support and assist youngsters from Qatar, Oman, and Poland.
Furthermore, in the last months, I have been working intensively on increasing communication, especially in the Middle East. As a result, HAEi will soon hold awareness and educational meetings for patients and caregivers in collaboration with ACARE centers. We have a confirmed workshop in Oman in January and Qatar in February, and we expect more meetings: in Kuwait, Saudi Arabia, and the United Arab Emirates in the first and second quarters of 2023. I would like to express my gratitude to Dr. Iman Nasr from ACARE in Muscat, Dr. Mariam Ali Yousuf Al-Nesf and Dr. Hassan Mobayedh from ACARE in Doha, Dr. Hassan Alrayes and Dr. Rand Arnaout from ACARE in Riyadh for their support and ongoing communication.
Finally, I am pleased to introduce Mr. Mohamed Osman, the HAEi Advocacy Facilitator in the Middle East and North Africa. He will work with Maria Ferron (Regional Patient Advocate for the Mediterranean and North Africa) and myself and will use his expertise and knowledge to serve and assist Member Organizations, healthcare professionals, and the pharmaceutical industry and work with the Regional Patient Advocates to benefit the HAE patients locally.
