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.
