From Regional Patient Advocate Michal Rutkowski
In this report, I will focus on the Middle East, as so much has been going on there in just a few months.
Indeed, the last three months have been the busiest period since I was appointed Regional Patient Advocate (RPA) for this region. At the same time, it has been an extraordinary period in which we fully reached a larger group of patients and HAE expert physicians in the Middle East. Taking this opportunity, I would like to express my gratitude to Fiona Wardman, the HAEi Chief RPA, and Mohamed Osman, the HAEi Advocacy Facilitator Middle East and North Africa, for their invaluable contribution, commitment and help in organizing HAEi Patient Meetings in Oman, Qatar, Saudi Arabia, and the United Arab Emirates, and Kuwait.
Fruitful cooperation with local Member Organizations allowed HAEi to successfully organize educational and awareness meetings:
- 14 January 2023, in Muscat, Oman
- 8 February 2023, in Doha, Qatar
- 25 February 2023, in Riyadh, Saudi Arabia
- 5 March 2023, in Abu Dhabi, United Arab Emirates
- 13 May 2023, in Kuwait City, Kuwait
A total of 125 attendees participated in the five meetings, and this achievement would not have been possible without the dedication of the local HAE
patients, caregivers, and HAE expert physicians. Therefore, I would like to acknowledge this group of amazing people (in the order of the organized meetings):
Dr. Salem Al Tamemi, Dr. Iman Nasr, Dr. Latifa Al-Shekaili, Dr. Salma Al Abri, Dr. Tariq Al Farsi, Maryam Al Balushi, Dr. Mariam Ali Yousuf Al-Nesf, Dr. Hassan Mobayed, Dr. Tayseer Ibrahim, Dr. Ramzy Ali, Ameera Elawad, Dr. Hassan Alrayes, Dr. Rand Arnaout, Ahmad Aleliwi, Dr. Mohamed Abuzakouk, Dr. Ravi Gutta, Shradha Singhania, Dr. Mona Al Ahmad, and Mubarak Al Ajmi.
Additionally, HAEi has also participated in important scientific conferences:
- The 2nd Qatar Allergy and Immunology Conference, and
- The 2nd Emirates Allergy & Clinical Immunology Conference.
Here HAEi had the opportunity to catch up with regional expert physicians and discuss the potential collaboration in different scientific projects. We are looking forward to it very much. Hopefully, we will be able to share specific details with you in the next edition of Global Perspectives.
Actually, it doesn’t stop here as HAEi keeps working on more local patient meetings in the Middle East to be held in 2023. It is the responsibility of the global organization to reach all patients regardless of the region and help them to advocate for themselves.
The start of this year was also busy for all members of the HAEi team, including the RPAs, with preparing for the 2023 HAEi Regional Conference EMEA (Europe, Middle East, and Africa) that will be held 1-3 September 2023 in Munich, Germany. I have been working closely with Member Organizations in my region to help them with the travel grant application and the registration process.
I am delighted to inform you that the following countries I am responsible for will be participating in this event (in alphabetic order): Armenia, Belgium, the Czech Republic, Egypt, Estonia, Georgia, Hungary, Iran, Iraq, Jordan, Kazakhstan, Latvia, Lebanon, Lithuania, the Netherlands, Oman, Poland, Qatar, Saudi Arabia, Slovakia, Ukraine, and the United Arab Emirates.
Finally, I am happy to share with you that more and more local Member Organizations are using HAEi resources. We just finalized the HAEi Emergency Room Poster in Czech and Persian, and I have been working on a children’s book translation with HAE Junior Czech Republic. Also, HAE Poland is about to release the
latest edition of The Brady Club Activity Book.
This being the first issue of the Global Perspectives, I’d like to welcome you to the New Year! I wish you all that 2023 will become a year of outstanding successes and achievements in your private and professional life. But most of all, that the HAE global family will continue advocacy successes in accelerating the diagnosis process, gaining access to and reimbursement for HAE modern therapies, and delivering HAEi projects and resources to our patients’ community.
May is always a special month with the hae day :-) celebrations. I would like to share with you two examples: During the meeting in Kuwait held on 13 May, I was privileged to celebrate hae day :-) together with the local community. Even though it was the first such kind of meeting, it was so amazing to see the patient interactions, willingness to share personal experiences, and different personal HAE journeys. So many questions were raised, and many answers were given.
On 6 May, the HAE Patient Day was organized by the HAE community in Belgium. The goal was to reconnect Belgian patients and celebrate hae day :-) 2023. There were 41 participants (including 11 online) to follow presentations of Belgium HAE expert physicians and patients.
