From Regional Patient Advocate Jørn Schultz-Boysen
The highlight of recent months has undoubtedly been the 2024 HAEi Global Leadership Workshop (GLW) and the inaugural ACARE Global Angioedema Forum 2024 (GAF), a pivotal moment for the global HAE community.
I had the privilege of co-hosting a breakout session alongside Fanny Schappler. We convened the leadership of the HAE organizations from Germany, Austria, Switzerland, Finland, Sweden, Norway, and Denmark.
The 3-hour breakout session provided a valuable opportunity for everyone to share their experiences, particularly regarding access to medication, which can be a significant challenge even in generally well-resourced countries. One story, for example, highlighted how where a patient lives within a country can dramatically impact their treatment options. These discussions were a strong reminder of why our work is so important, no matter how developed or resourceful a country may seem.
We also explored new HAEi tools, including the HAEi Patient Travel & Relocation Toolkit and the HAEi Virtual Meeting Toolkit. In addition, we touched on many of HAEi’s established resources—such as Hosted Websites, Connect, FocalPoint, Women with HAE, Understanding HAE, LEAP25, and Advocacy Academy—all of which sparked significant interest. It was encouraging to see how eager the participants were to explore and utilize these tools to benefit their communities.
Thank you to everyone who contributed to this discussion and for your vital work in your respective country. I left the workshop feeling inspired. While the challenges faced by people with HAE and their families are ongoing, the commitment and passion within our community give me immense confidence in the path ahead.
I have had the privilege of working with the region covering Germany, Austria, Switzerland, Israel, Finland, Sweden, Norway, Denmark, and Iceland for several years. However, as of 1 September 2024, we restructured these duties. My colleague Fanny Schappler has taken over responsibilities for Germany, Austria, Switzerland, and Israel. Fanny was introduced to these Member Organizations before Copenhagen and had the opportunity to meet many of them during the workshop. I know she is excited to continue the great work in this region.
Thank you to all the wonderful people I have worked with in Germany, Austria, Switzerland, and Israel. I look forward to meeting you all again soon, and I am confident you will achieve wonderful results with Fanny’s support.
I am eager to continue this critical work as I now focus on my new region—Finland, Sweden, Norway, Denmark, Iceland, Greenland, and the Faroe Islands. I look forward to the progress we will make together. Thank you again to all who participated in this impactful GLW, and I look forward to continuing our efforts on behalf of the HAE community.
We continue recruiting patients and caregivers for the ongoing Pharmaco- and Socioeconomic study in Germany, Austria, and Switzerland.
This important survey focuses on how access to treatment impacts on quality of life—not just for the individual with HAE but their entire family.
We encourage as many patients and caregivers as possible to participate to ensure a comprehensive and impactful study >> click to participate