News from East Asia

From Regional Patient Advocate Yong Hao Lim

The final months of 2024 and the early months of 2025 felt like a brief pause between the 2024 HAEi Global Leadership Workshop and ACARE Global Angioedema Forum 2024 (GLW/GAF) in Copenhagen, and the 2025 HAEi Regional Conference APAC in Manila. Much of my time has been spent on follow-ups from GLW/GAF and preparation for the Regional Conference APAC, an extremely successful event connecting patients, caregivers, young advocates, and medical and pharmaceutical professionals from across the region.

Around my work for the conference, I continued engaging with healthcare professionals to raise awareness about HAE—one of the priority areas identified by MO leaders at the GLW. Highlights were opportunities to share information with physicians at the APAAACI Congress in Kuala Lumpur in mid-December and the Carry Hope Forum, part of Rare Disease Day, in Singapore in February. In Kuala Lumpur, I reconnected with familiar faces while introducing HAE to physicians from Malaysia and Indonesia. In Singapore, I spoke about my experiences as both a patient and an advocate to a diverse audience that included rare disease patients, advocates, policymakers, medical geneticists, genetic counselors, and pharmaceutical representatives.

The prime goal of these speaking engagements is to raise awareness for HAE, but they also provide valuable insights. Speaking with physicians who were learning about HAE for the first time helped me understand their perspectives on the condition, how their healthcare systems can support HAE patients, and their views on second-line treatments. Additionally, I gained insights into relevant topics, such as penetrance and genetic counseling, and identified new opportunities to engage with the medical community.

I have also interacted with HAEi Regional Medical Advisory Panel (RMAP) members, ensuring they stay connected with patient organizations, and I can hear the latest developments in HAE management and patient support in their countries. Through these conversations, discussions are now underway about establishing new ACARE centers in Malaysia, Singapore, and possibly Taiwan, to further enhance patient care.

We are preparing for this year’s hae day :-), and I am strongly encouraging more participation in the #active4HAE challenge. Sharing these experiences raises awareness and fosters a sense of community among HAE patients and supporters. Regular physical activity also contributes to mental well-being—another key area identified by MO leaders at the GLW.

My ongoing work in between the major events is to connect, educate, and advocate—and everyone’s efforts in these areas drive lasting progress.