News from East Asia

From Regional Patient Advocate Yong Hao Lim

In my region, there is a spectrum of organizations, ranging from those that have emerged more recently and are led by one or two dedicated individuals finding their voice to those that are more established. My role working with a more established organization is mainly supportive. I look for ways HAEi resources can be coordinated to strengthen their efforts and build collaborations across borders. One way of doing this is to enable knowledge to travel more freely. We are streamlining the translation of key HAEi materials, starting with Understanding HAE, so that patients and caregivers in the region can access reliable information in Simplified Chinese, Bahasa Indonesia, and Japanese.

In recent months, my focus has been on those countries with younger Member Organizations (MOs) and working with them to build the foundations for HAE awareness and support, particularly in Malaysia, Indonesia, Singapore, and Mongolia. These efforts were closely aligned with the APAAACI 2025 Congress held in Jakarta in October. I have attended the congress regularly over the past three years as it provides a valuable platform to stay connected with HAE knowledgeable physicians, introduce HAE to new clinicians, and stay updated on developments in HAE research across the region. It is also one of the few occasions where established partners and new collaborators can meet in person.

In the weeks leading up to the Congress, I connected with physicians from several countries to identify advocacy issues specific to that country that could be discussed further in person. In Indonesia, the focus is on identifying more patients and working with interested doctors. In Malaysia, the aim is to energize patient engagement and link education with professional meetings. For Mongolia, the goal is to understand the diagnostic gaps and identify senior physicians who can champion rare-disease care.

With a clear agenda in place, the in-person discussions proved especially fruitful. Physicians, including those who have been supporting HAE and HAEi work, exchanged valuable insights on how partnerships involving patient groups and physicians can anchor each stage of patient group growth. I was heartened by the renewed collaboration in Indonesia, where physicians and patient leaders are now planning concrete steps to improve access and care. Similar alignment is emerging in Malaysia and Mongolia, where doctors are exploring ways to build sustainable support systems.

Organizational growth lies in both visible achievements, such as numbers and events, and in the quieter, yet crucial, strengthening of networks and trust. Progress depends on people who are willing to learn, share, and connect. HAEi’s vision is a united and strong HAE global community. As an RPA, I am committed to supporting that process by linking efforts, aligning strengths, and helping every MO find its own rhythm of growth within our wider HAE community.