Michal Rutkowski

From Regional Patient Advocate Michal Rutkowski

Hello HAEi Friends!

I truly hope you had an enjoyable and relaxing summertime spent with your loved ones.

I am happy to catch up with you again and to share what happened over June, July, and August. It has been a very busy time dominated by the 2023 HAEi Regional Conference EMEA.

Having this opportunity, I would like to express my gratitude to all patients, caregivers, and expert physicians from Central Eastern Europe, Benelux, and the Middle East who participated at the HAEi Regional Conference for our HAE community from Europe, the Middle East, and Africa. It is always so important to get together, share experiences, get to know the latest updates on the condition and treatment availability and interact with HAE stakeholders. And, most of all, to be among those who understand us very well.

The conference in Munich gathered HAE people from the following countries in the regions I look after (in alphabetical order): Armenia, Belgium, the Czech
Republic, Egypt, Estonia, Georgia, Hungary, Iran, Kazakhstan, Latvia, Lebanon, Lithuania, the Netherlands, Oman, Poland, Saudi Arabia, Slovakia, Ukraine, and the United Arab Emirates. Unfortunately, visa issues prevented friends from remaining countries joining us in Germany. 

Although my main focus was preparations for the HAEi Regional Conference EMEA, before the conference in Munich, many other amazing things happened.

In mid-June, HAEi organized and attended the HAE Patient Workshop in Cairo, Egypt, dedicated to patients, caregivers, and local doctors. 35 people from Egypt, Jordan, and Libya participated in person, and 3 from Tunisia participated virtually. We had an opportunity to interact with HAE Expert physicians, Dr. Elham Hossny, Professor of Pediatrics at Children’s Hospital, Ain Shams University and Secretary General of Egyptian Society of Pediatric Allergy and Immunology, and Dr. Wala Mohamed Shoman from Alexandria University Children’s Hospital. Also, there was a session on the global perspective of HAE presented by HAEi Executive Vice President Global Advocacy Fiona Wardman, and a session on HAEi tools and resources presented by HAEi Advocacy Facilitator Middle East and North Africa (MENA) Mohamed Osman. There is so much to do in Egypt, as among the total population of 110 million people, there are only just over 40 HAE patients diagnosed. Therefore, HAEi discussed with Dr. Elham Hossny, the leading local HAE expert, to have a pilot project of the Heat Map Survey in Egypt. The Heat Map Survey is the methodology for countries where there are few, if any, people diagnosed with HAE. The objective is to identify pockets of people who may have the condition. I enjoyed attending a virtual meeting with Dr. Elham Hossny and HAEi Chief Scientific Officer Deborah Corcoran. Fingers crossed, we will have this survey running in Egypt shortly.   

In late June/early July, I helped to organize the first-ever HAE Poland Youngsters Summer Workshop. This event was part of Dominika Blacharska’s HAEi LEAP project; Dominika is a HAEi Youngsters Advisory Group member and an HAE Poland Regional Patient Advocate. The project was to empower and motivate young people with HAE to start advocating for themselves and other HAE patients. There were 43 attendees at the 3-day meeting, including 29 youngsters, their chaperones, expert physicians, a nurse, a psychologist, and a famous Polish celebrity!

Also, in July, I was privileged to attend the 2023 US Hereditary Angioedema Association Summit in Orlando, Florida. It was an extraordinary experience for me to see 1,200 HAE friends in one room and to see the work that the HAEA team has done – great motivation and inspiration for further advocacy activities in my regions.

Furthermore, I was invited to attend the HAE Junior Czech Republic Summer Camp. However, due to the date conflicting with two other advocacy events, I couldn’t participate in person in this important meeting.
Therefore, I recorded a video for the children and adolescents who attended the 3rd edition of the Summer Camp. 

During June, July, and August, I had numerous different virtual meetings with:

• HAEi Member Organizations from Algeria, Georgia, the Netherlands, Oman, and Qatar
• Industry partners from BioCryst, BioMarin, CSL Behring, KalVista, Pharvaris, and Takeda
• HAEi Global Advocacy Team and Operations Team
• HAEi Advocacy Facilitator MENA.

As always, I constantly work on implementing HAEi resources and projects in the regions. I am happy to share with you that HAE Georgia has launched its website, hosted by HAEi.

>> Meet the Regional Patient Advocates

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.

>> Meet the Regional Patient Advocates