From Regional Patient Advocate Michal Rutkowski
It likely won’t come as a surprise that my recent activities have been around the biggest HAE event of the year – the 2024 HAEi Global Leadership Workshop (GLW). I had the great privilege of actively participating in this gathering, and I’d like to share the key highlights relevant to the regions I am responsible for, and some additional updates from Copenhagen and beyond.
The GLW is a flagship event for the global HAEi community, offering a unique opportunity to engage with leaders from patient organizations, expert physicians, and representatives from industry partners. I would like to extend my deepest gratitude to all the HAEi Member Organizations for their unwavering dedication and efforts to attend. I am incredibly proud that the following countries from Central Eastern Europe and the Middle East were able to be present in person: Armenia, the Czech Republic, Egypt, Georgia, Hungary, Iran, Kazakhstan, Lithuania, Oman, Poland, Qatar, Saudi Arabia, Slovakia, Ukraine, and the United Arab Emirates. I truly hope that those unable to attend this GLW will be able to join us in the future.
The GLW is a testament to how individuals from different cultures, ethnicities, and languages – each bringing their unique perspectives – can come together in a shared mission to improve the global outlook for patients with HAE. We gathered in Copenhagen twelve years after the first HAEi Global Conference and witnessed the remarkable progress made in just over a decade.
RPA Maria Ferron and I decided to group culturally similar regions for more effective breakout discussions. This approach allowed us to host two separate breakout sessions: one for the Middle East (ME) and North Africa (NA) and another for the Mediterranean, British Isles, Benelux, and Central Eastern Europe. Below, I’ll share what we accomplished during the session for the ME and NA regions.
Maria and I decided to initiate the HAEi Patient-Driven Research program called the “State of Management of HAE” to create a report on the current state of care and medication access for HAE patients in ME and NA. Working with Debs Corcoran, HAEi’s Chief Scientific Officer, and Mohamed Osman, HAEi Advocacy Facilitator MENA, we designed and translated the survey. Member Organizations (MO) completed it during the session. HAEi will analyze the responses to produce the final report, which will be the first of its kind from HAEi for ME and NA. This study is a crucial first step in assessing the situation in individual countries and regions, and it will serve as a foundation for future engagement with health ministries across the ME and NA regions.
During the session, we provided participants with valuable insights into clinical trials, specifically focusing on HAE trials. This topic is particularly relevant given the growing interest in conducting these trials in Middle Eastern countries. We also addressed the potential for cross-border clinical trials, highlighting how the linguistic and cultural similarities across the ME and NA regions could facilitate patient participation in trials conducted outside their home countries, depending on local regulations. This could enhance the region’s involvement in clinical research, accelerate the registration of new therapies, and improve patient access to innovative treatments.
Additionally, we presented participants with an overview of the modern HAE medicines currently registered/licensed in ME and NA. We also encouraged MOs to run active social media awareness campaigns, utilizing multilingual materials–available in Arabic and French–prepared by HAEi. This approach enables MOs to efficiently and effectively reach a broader audience, increasing awareness and engagement with HAE patients in their respective countries.
Finally, we explored several HAEi tools to support MOs and individual patients. These included HAEi FocalPoint, HAEi Connect (now available in Arabic), the Patient Travel and Relocation Guide, and the Virtual Meeting Toolkit.
The session was marked by engaging questions, lively discussions, and a shared sense of accomplishment, with participants feeling that the time spent was valuable and productive.
In addition to my involvement with the GLW, I was actively engaged in various initiatives supporting the MOs from the regions under my responsibility. Below are some of the key activities:
- I was privileged to conduct virtual meetings with representatives from Armenia, Georgia, Hungary, Iran, Jordan, Kazakhstan, Lebanon, Russia, Ukraine, and the UAE. During these discussions, we addressed the current challenges faced by our members, and together, we worked towards finding solutions to some of these issues.
- I collaborated with HAEi’s Chief Scientific Officer, Debs Corcoran, as well as fellow RPAs Natasa Angjeleska, Maria Ferron, and Jorn Schultz-Boysen on the HAEi Patient-Driven Research: State of Management of HAE in Europe.
- With the launch of the next edition of the LEAP educational program, I reached out to MOs, encouraging them to collaborate with young people from their respective countries.
- Supporting local HAE communities remains a top priority for HAEi. In recent months, alongside HAE Jordan and Mohamed Osman, we have invested significant effort in organizing another local community meeting, this time in the capital of Jordan, Amman.
- We continue to work to broaden access to HAEi’s tools and resources:
- “Women with HAE” has recently been translated into Arabic, Czech, Kazakh, Lithuanian, and Russian. We are also progressing with the Persian translations of the “Understanding HAE” and “Women with HAE” booklets.
- We are collaborating with HAE Slovakia to develop and host their new website.