News from East Asia

From Regional Patient Advocate Yong Hao Lim

My goal for hae day :-) 2025 was to continue the focus on mental health from last year’s Global Leadership Workshop in Copenhagen, by encouraging patients and caregivers to engage in healthy activities, reconnect with loved ones, and inspire others to do the same. I had #active4HAE wristbands made in purple for some patients and caregivers across the region as a simple and meaningful way to encourage participation and foster belongingness.

Between April and June, patients, caregivers, and friends across Asia Pacific (APAC) joined the #active4HAE challenge. We logged 277 activities and took around 4.3 million steps, marking a milestone for APAC participation. I am already thinking about 2026 and exploring regional or multi-country events to build on this momentum.

In recent months, I had the honor of presenting at 2 very different platforms, 1 primarily for doctors and 1 for patients and caregivers.

On behalf of HAEi, I travelled to Dhaka, Bangladesh, for the 7th International Conference of the Bangladesh Academy of Dermatology. My presentation focused on what patient organizations and healthcare professionals can do to support patients, introduced HAEi, and highlighted recent work showing the impact patient groups have made across APAC. During the meeting, I connected with HAE Bangladesh’s leader and met with local patients and physicians eager to learn about the condition. A conversation with a pediatric dermatologist stood out. She asked if I knew of any HAE training programs, and I shared details of the upcoming EAACI Hong Kong Allergy School in August.

A month later, I attended the National HAE Annual Meeting in Beijing. During the planning of the meeting, we provided information and any guidance we could on sponsorships. In Beijing, I joined a pre-meeting sharing session with patients and caregivers, gave a short opening address, and took part in a roundtable discussion on improving HAE care and management in China.

The passionate specialists at Peking Union Medical College Hospital delivered valuable talks on a variety of HAE subjects. It is impressive to have over 20 HAE-knowledgeable physicians at a single institution. Still, for patients spread across a vast country like China, the goal is to have trained professionals in many provinces, and a key point for discussion at the roundtable. The hospital team and HAE China, with HAEi, can work to raise physician awareness nationwide.

A conversation with Professor Zhi Yuxiang left a deep impression. She commented that many outside China remain unaware that there are at least 1,000 diagnosed HAE patients in the country. Many assume China has no HAE patients at all. This example reinforced my belief that connection is only the beginning. What matters next is what flows from it: the need to know and to share. This dynamic plays out across every level of our work, from individual patients to Member Organizations to Regional Patient Advocates; connecting and sharing is fundamental to advocacy:

• For example, at the individual level, in Mongolia, a caregiver asked how to get a diagnosis when few HAE-knowledgeable doctors exist. In Singapore, someone relocating wanted to know where to find a physician familiar with HAE. These small, personal questions are crucial first steps toward better care, and providing a lead or contact can change someone’s path entirely.
• In Hong Kong, the local patient group wanted their work accurately represented and information easily accessible on their website and Facebook page. In Japan, leadership was keen to learn from more mature organizations on strengthening advocacy and to share experiences despite language barriers.
• Interacting with fellow RPAs, I am exploring how HAE India organizes its community and whether any learnings could help HAE China, and Bangladesh’s Heat Map model sparked Indonesia’s Heat Map idea.

These past months have reinforced that progress is not just about what we know or do, but also about what we share and how open we remain to learning from each other. By fostering this spirit of curiosity and generosity, we can continue to raise the standard of care for HAE across our region and beyond.