News from East Asia

From Regional Patient Advocate Yong Hao Lim

2025 highlights

In 2025, my region saw much progress across treatment access, patient engagement, and research activity, reflecting a maturing HAE landscape.

Access to treatment continued to improve, with expanded reimbursement pathways and the introduction of established and emerging therapies, including existing treatments such as icatibant and lanadelumab, as well as newer options such as sebetralstat and garadacimab. Clinical trials also increased substantially, with studies initiated, ongoing, or completed in Singapore, Taiwan, China, Hong Kong, South Korea, and Japan, totaling 28 trials (trials conducted across multiple countries are counted more than once).

Patient and caregiver engagement grew markedly as more patients were diagnosed, and, more importantly, more patients and caregivers became active members of their respective organizations. HAE China’s membership expanded from approximately 300 to 420, a 40% increase. In Malaysia, the number of known diagnosed patients grew from around 10 to nearly 30, while in Indonesia it increased from 3 to more than 10. Mongolia has also seen the emergence of new patients currently undergoing diagnostic evaluation.

At the regional level, the 2025 HAEi Regional Conference APAC in Manila in March welcomed many first-time attendees, while participation in #active4HAE reached a new high with over 4.3 million steps recorded. Across the region, local patient meetings were also held more frequently.

Lastly, the growing focus on HAE across the region was demonstrated in research output involving regional authors or studies conducted in the region. Scientific publications increased from 28 in 2024 to 51 in 2025. Many involved new physicians and researchers, indicating broader engagement across the region.

Hopes and goals for 2026

Looking ahead to 2026, my first hope is to see stronger collaboration among MOs across the region, not only to share resources and good practices, but also to build a stronger sense of belonging to an international and regional HAE community. A second, equally important aim is to develop more systematic data on patient activity, awareness, and diagnosis to support more informed planning and guide advocacy, education, and resource allocation.