News from East Asia

From Regional Patient Advocate Lim Yong Hao

2024 Highlights

My region has seen significant progress in raising awareness and advancing research on HAE. A key highlight is the considerable media coverage across platforms like online news, YouTube, and social media, with at least 40 features promoting HAE awareness. Notably, the Illness Challenge Foundation in China engaged celebrities to share videos on Douyin, and 22 Japanese landmarks were illuminated in purple to mark hae day :-) supported by the Discovery Consortium.

Scientific research on HAE has also grown substantially. Publications from the region increased from 15 annually in 2021 and 2022 to 28 by November 2024. These works, including systematic reviews, clinical trials, and case reports, reflect a rising interest in HAE research. Regional Medical Advisory Panels (RMAPs) and other physicians are actively collaborating to enhance understanding of HAE diagnosis and treatment in the region, with another impactful manuscript currently pending publication.

Lastly, the breakout session at the 2024 HAEi Global Leadership Workshop brought together patient leaders from Member Organizations (MO) to share experiences and strategize regional collaboration. This rare gathering promises to foster partnerships and more learning opportunities, hopefully strengthening efforts to improve the lives of HAE patients across the region.

Hopes for 2025

My hope for 2025 is to see greater collaboration among MOs within the region. Such partnerships have the potential to foster innovative ways to raise public awareness about HAE, leading to a more significant impact. I also hope for sustained scientific collaboration throughout 2025, advancing progress in research. The synergy between these public awareness and scientific efforts would enhance opportunities to expand access to clinical trials and treatments in more countries across the region.