From Mdm Zhang Nan, HAE China, and Lim Yong Hao, RPA HAEi
Hosting an Impactful Annual HAE Conference
In 2025, we hosted the 9th Annual HAE Patient Conference in China, bringing together more than 200 patients, family members, and healthcare professionals, making it the largest patient-focused HAE conference to date. Alongside the conference, a large-scale free clinic was organized at Peking Union Medical College Hospital, where over 70 patients received consultations. Close to 20 patients underwent initial screening, creating important opportunities for earlier diagnosis and timely intervention.
Supporting Drug Development and Expanding Treatment Options
Over the past year, three new HAE therapies entered clinical trials in China. Through patient engagement and information-sharing, we supported more than 100 patients in making informed, voluntary decisions to participate in these trials. Their involvement has been vital in advancing research, accelerating clinical development, and contributing to the future availability of new treatment options for HAE patients in China.
Growing the Patient Community and Extending Support
Our patient community continued to grow steadily in 2025. Through outreach and media engagement, membership increased by more than 90 individuals, bringing our total membership to 420. We remain committed to building a supportive and inclusive community, ensuring that every patient has access to reliable information, peer support, and a strong sense of belonging.
Patient Advocacy Priorities for 2026
Looking ahead to 2026, our advocacy efforts will focus on two key priorities:
- Identifying Undiagnosed Patients
We will strengthen public awareness initiatives and deepen engagement with primary healthcare institutions to improve recognition of HAE. We aim to shorten the diagnostic journey for undiagnosed patients and connect them earlier to appropriate medical care and support networks. - Improving Access to Innovative Treatments
We will continue to support patient participation in clinical trials and work with stakeholders to improve pathways for access to innovative HAE therapies. Our goal is to ensure that patients in China can benefit from timely, equitable access to a broader range of treatment options and greater autonomy in managing their condition.