From Mdm Zhang Nan, HAE China, and Lim Yong Hao, RPA HAEi

This year’s HAE National Annual Meeting unfolded over two days, from June 27 to 28, at the Tiantan Hotel in the heart of Beijing. Held under the banner “United in Strength, Hope for the Future,” the event brought together nearly 180 patients and family members from across the country, along with leading medical experts and patient organization leaders. Jointly organized by the Chinese Organization for Rare Disorders (CORD) and HAE China (also known as the Yu Yan Angioedema Care Center), the meeting showcased the tremendous strides China has made in the diagnosis, treatment, and community support for patients and caregivers living with HAE.

This year marked a significant milestone in China’s nine-year journey of officially organizing HAE activities. Reflecting on the humble beginnings, Mdm Zhang Nan, National Contact for HAE China, shared how the initiative began in 2016 with a modest gathering of just 20 patients at Peking Union Medical College Hospital (PUMCH). Today, the annual meeting has grown into a large-scale national event. HAE China’s membership has expanded from 130 to nearly 400, while the number of hospitals capable of diagnosing HAE has increased from just one to more than 100 across the country.

According to Mr Kevin Huang, founder of CORD, the number of diagnosed HAE patients in China has now surpassed 1,000. He expressed a hopeful vision for the future where patient gatherings are not prompted by illness, but by shared journeys and life experiences. What was once a condition without treatment options has seen a major breakthrough: first-line HAE medications are now included in public health insurance. These achievements reflect a remarkable collaboration between medical professionals, pharmaceutical companies, patients, and caregivers.

During the meeting, medical experts from PUMCH, led by Professor Zhi Yuxiang, provided timely updates on the evolving landscape of HAE care in China. Topics included the early detection of laryngeal edema, the importance of genetic counseling in family planning, and the ongoing challenge of misdiagnosis. Professor Zhi also mapped out the treatment timeline and discussed the availability and reimbursement of both on-demand and preventive therapies. Domestic pharmaceutical innovation is also gaining momentum, with several Chinese-developed therapies currently in clinical trials.

The conference also served as a valuable platform for dialogue between doctors and patients. In the Q&A session, medical experts addressed practical concerns such as medication intervals and daily precautions. Patient testimonies, ranging from individuals who endured years of misdiagnosis to advocates who successfully lobbied for local policy changes, offered moving accounts of resilience and determination.

In a roundtable discussion, Mr Lim Yong Hao, HAEi’s Regional Patient Advocate for East Asia, commended China’s growing leadership in the region. He called for the further development of a tiered diagnostic system to reduce regional disparities and emphasized the importance of increasing the number of HAE-trained healthcare professionals to improve care delivery and disease management. Pharmaceutical partners echoed their commitment to strengthening treatment infrastructure and raising public awareness.

As the event came to a close, Mdm Zhang Nan acknowledged the challenges that remain, namely, limited awareness of HAE and unequal access to treatments. Still, her message was one of perseverance and solidarity: “Rare does not mean forgotten.” The meeting concluded with a group photo and a shared pledge among participants to meet again in 2026.

Special thanks were extended to Takeda China, Qualifind Medical, CNBG, and Argo Biopharma for their generous support. Through continued collaboration, the vision of a better future for HAE patients in China is steadily becoming a reality.