From Regional Patient Advocate Maria Ferron
The months leading up to the 2024 HAEi Global Leadership Workshop (GLW) have been nothing short of exhilarating. Coordinating the participation of representatives from various countries is one of the more challenging aspects of preparing for the GLW. However, seeing how effectively we can bring together diverse voices and perspectives is incredibly rewarding. I’m delighted to report that we have secured a good representation from most countries in the region. In the weeks leading up to the GLW, I immersed myself in developing content aimed at addressing the pressing issues HAE patients face. The excitement of preparing presentations and discussions that promise to foster dialogue and inspire positive change has been invigorating.
During the GLW, HAEi dedicated time to a series of regional breakout sessions. Fellow RPA Michal Rutkowski and I decided to group culturally similar areas from our regions for more effective breakout discussions. This approach allowed us to host two separate breakout sessions: one for the Mediterranean, British Isles, Benelux, and Central Eastern Europe countries, and another for Middle East (ME) and North Africa (NA).
Among the many highlights of the GLW, the breakout sessions stood out as pivotal settings for in-depth discussions and actionable strategies. The Mediterranean, British Isles, Benelux, and Central and Eastern Europe session was structured around key themes relevant to these areas. The informal atmosphere encouraged networking, allowing leaders in the HAE community to forge valuable connections. Many left the breakout with plans for the upcoming months, for example, implementing some of the tools and resources HAEi offers to all the Member Organizations, being prepared to manage their HAE, or being more active on social media to advocate and raise awareness. The energy and passion exhibited by the participants during the breakout sessions emphasized the collective commitment to making meaningful progress in the field of HAE.
Outside of the GLW preparations, the summer season brings unique challenges for patients with HAE, making it crucial for me to ensure that patients enjoy their vacations and do so with the necessary medical preparedness. Amid bustling tourist activities, I prioritized connecting with patients to ensure they have comprehensive emergency plans in place. Establishing communication with local healthcare providers and regional associations is essential to facilitate timely assistance if needed. Additionally, I encourage patients to utilize the resources available through HAEi. The “HAEi Travel & Relocation Guide” is an invaluable tool that offers essential tips for safe travel and relocation, catering specifically to those living with HAE.
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This period has also provided me with the opportunity to support countries grappling with access to modern treatments for HAE. Advocating for these advancements is crucial to improving the quality of life for patients in our region. Beyond that, I am thrilled to share that we’ve made significant strides in the official registration of the Belgium association. This milestone marks progress for Belgium and enhances our collective efforts to promote awareness and understanding of HAE worldwide.
Returning to the GLW, the workshop provided a dynamic platform for HAE leaders to collaborate, share insights, and drive initiatives to improve patient care and advocacy. I can hardly wait to see what the future holds as we progress together after this important event.