From Regional Patient Advocate Lim Yong Hao
Over the past few months, I’ve been reminded repeatedly of the importance of connecting with others in patient advocacy and public awareness work. There’s something truly powerful about meeting and interacting with people in person. Even virtual interactions, whether via video conferencing or email, can still create meaningful connections. You may wonder, “What positive outcomes can come from these interactions?” The answer is simple: plenty.
One of the most fundamental benefits is knowing that you’re not alone. For patients, it’s comforting to realize that others out there share your experiences. For patient advocates, seeing others who are equally committed to improving patients’ lives is encouraging. Meeting like-minded individuals creates opportunities to support one another, providing motivation on our shared journeys.
Another significant benefit of connecting with others is the exchange of new information. There are always new developments in the understanding, diagnosis, treatment, and management of HAE. Sharing this knowledge can be incredibly valuable, whether on a personal level or for advancing the work of Member Organizations (MO). One of the most impactful opportunities is collaboration—working together to amplify the impact of our efforts.
In late June, HAE China held its National Patient Meeting in Beijing. More than 120 patients and family members attended, with many meeting others like themselves for the first time. Patients and families shared their stories, provided mutual support, and maintained a sense of optimism about the future of HAE care in China.
The meeting included presentations from physicians and patient advocates, including HAEi’s Fiona Wardman. Attendees gained insights into HAE, treatments and upcoming therapies, research, gene therapy principles, and managing gastrointestinal symptoms and laryngeal edema. I was honored to have played a small role in shaping the agenda and identifying additional funding sources, which allowed more patients and families to attend. Unfortunately, due to an accident that left me with a broken ankle, I had to cancel my trip at the last minute. While I was disappointed to miss the event, I was thrilled to hear it was a resounding success.
During my recovery (while worrying whether the injury might trigger an attack—which fortunately didn’t happen), I was fortunate to participate in two news features. One was a student project for a mass communication program in Singapore. The other was a video recording of my story on a regional medical news platform where I shared insights about HAE and my journey. These opportunities arose through my ongoing connection with the Rare Disorders Society of Singapore. The video was released on YouTube in late October and has received nearly 6,000 views. I’m glad that my story reached both students in the program and a larger regional audience. Surprisingly, the video also sparked interactions in the comments section and private messages, leading to meaningful discussions on HAE. This experience illustrates how connections can lead to opportunities, generating even more connections.
The 2024 HAEi Global Leadership Workshop (GLW) in Copenhagen was a culmination of this theme of connection. It offered countless opportunities to connect. I reconnected with many patient leaders from my region. I also met patient leaders from Japan and South Korea, whom I am now supporting as their Regional Patient Advocate (RPA) after taking over from Fiona in September. I met patient leaders from Thailand, the Philippines, Pakistan, and India, supported by my colleagues Tony, Henrik, and Fanny (our latest addition to the HAEi RPA Family). Fanny lives in Singapore, so I now have a compatriot nearby for advice and second opinions. I also reconnected with physicians and spoke with representatives from pharmaceutical companies to explore the latest in HAE treatments and potential funding opportunities.
Aside from the exciting program, the workshop’s highlight was the breakout session I facilitated for East Asia, Southeast Asia, and South Asia patient leaders. I began engaging with MOs three weeks before to gather input for the session agenda. I received valuable insights from everyone, including those from Bangladesh, Afghanistan, Hong Kong, and Indonesia who couldn’t attend. During the session, I shared an overview of the current HAE landscape in the region, and patient leaders from Japan, South Korea, China, Taiwan, Singapore, Thailand, the Philippines, India, and Pakistan shared their plans for 2025. This led to a fruitful discussion on areas where MOs could collaborate. By the end, we collectively identified three critical areas for joint efforts: (1) raising awareness and educating healthcare professionals about HAE, (2) securing funding from pharmaceutical companies, and (3) addressing mental health challenges and stigma faced by HAE patients. I’ve received anecdotal feedback that some leaders took back valuable ideas to implement in their countries, which is a great outcome.
Our challenge is translating these collaboration areas into actionable plans involving as many MOs as possible. Progress in this area will be testament to how connecting with others can lead to meaningful collaborations. Ensuring patient leaders stay connected will help sustain the momentum and lead to more effective advocacy for HAE.
Planning for our next opportunity to connect is already underway. The 2025 HAEi Regional Conference APAC will occur from March 7-9, 2025, in Manila, Philippines. Some of the ideas MOs discussed during the breakout session will be integrated into the conference agenda. This event will also include a larger group of patients and caregivers, extending beyond the leaders who attended the GLW. We hope to welcome as many people from the region as possible to the conference; let’s make the most of this opportunity for patients and caregivers to connect and support one another.