News from East Asia

From Regional Patient Advocate Yong Hao Lim

Much of my work as a Regional Patient Advocate in early 2026 focused on meaningful regional collaboration across the Asia Pacific region.

The region is highly diverse, with major differences in healthcare systems, reimbursement structures, treatment availability, and the maturity of Member Organizations (MOs) across countries. As a result, many solutions remain country-specific, yet there are areas where regional collaboration appears increasingly meaningful and achievable.

One area has been cross-border awareness efforts. In recent months, I held discussions with multiple MOs about a coordinated regional #active4HAE initiative for hae day :-) 2026 involving simultaneous walks or gatherings connected through livestreaming. The intention is to create a shared sense of participation and lower barriers for smaller or emerging communities to take part. A visible symbol of this effort is the purple wristbands distributed across countries in the region, which some may have seen on social media and haeday.org.

Another area is patient involvement in regional guidelines and collaborative initiatives. I was involved in identifying and engaging patients willing to participate in an initiative to better incorporate patient perspectives into HAE management approaches that reflect the realities of resource-constrained healthcare systems across the Asia Pacific region. I continue to support interactions between patients and physicians in this regional project.

Engagement with pharmaceutical stakeholders and distributors emerged as an area where regional collaboration may become increasingly important. With fellow RPAs, we discussed generic medicines, market authorization, distribution challenges faced by smaller manufacturers, and encouraging distributors to consider introducing newer HAE treatments into Asia Pacific through broader regional approaches rather than purely country-by-country models.

My work also remains operational and immediate, supporting patients, coordinating activities, and running awareness initiatives. I continued to support work on the Korean Emergency Card, Simplified Chinese educational materials, and Bahasa Indonesia screening questions for the ACARE initiative tenquestions.net.

Different countries require different forms of support, and approaches that work in one setting may not work in another. I am more motivated than ever to be intentional about regional advocacy, collaboration, and the evolution of support for MOs.