On 16 May 2020, HAE China in collaboration with the Chinese Organization for Rare Disease (CORD), with the support of Takeda China, held an online live event with the theme “Change edema to zero, imagine the future” which was a great success. The Director of CORD Mr. Huang (Kevin) Rufang and the attending physician of the Allergy Department of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences Professor Yuxiang Zhi along with Mrs. Nan Zhang (patient and Director of HAE China) presented during the broadcast. The intention of the live event was to assist in the understanding of how HAE can be improved, and more patients can be diagnosed and treated correctly in time.

The broadcast began 10:30 a.m., Ms. Zhang spoke with empathy on her desire to help HAE patients cope with the disease and improve their quality of life. Mrs. Zhang also shared the story of how HAE China was founded in 2017 with the help of HAE International, the CORD rare disease center and Professor Zhi.

During the broadcast, Mr. Rufang called on the public to pay more attention to the rare disease. He said CORD and the HAE community will actively provide services to patients with the disease.

In this live broadcast, Professor Zhi explained in detail the basic knowledge related to HAE and what to pay attention to in the life of HAE patients, which led to the introduction of therapeutic drugs in China and greatly relieved patients’ anxiety. HAE patients should expect to see new drugs on the market in the near future.

A total of 17,084 people watched the broadcast online for 1 hour and 30 minutes, and since the end of the transmission, HAE patients have been joined by other patients, who have comforted and encouraged each other. The incidence of HAE is one in 50,000. However, only a few hundred people in China’s population of 1.4 billion have been diagnosed with the disease. We hope that all circles in the world will pay more attention to and understand HAE so that more patients can be diagnosed as soon as possible, find the right treatment path and harvest sunshine. As the song sings, “dream of the future, and you will be safe and sound”.