From HAE China
In 2023, we promoted through official accounts and celebrities on multiple well-known social media platforms while organizing various offline activities to expand our organizational influence and continuously achieve good results. The organization currently has 267 members and has established volunteer service organizations in 25 provinces and cities in the Chinese Mainland. These numbers will continue to increase in the future.
Looking back on 2023, our work has three highlights:
Highlight 1: In April 2023, we held a three-day doctor-patient exchange conference in Beijing, which was attended by nearly 100 people, making it the largest conference in recent years. At the conference, patients shared their personal experiences, doctors gave professional explanations and answers, and doctors from Peking Union Medical College Hospital provided free consultation services for patients. Through this conference, more people have a deeper understanding of HAE, and even more than ten people have registered to become volunteers on the spot.
Highlight 2: We have established 25 HAE WeChat groups divided by provinces and cities, with a total of 28 volunteers providing services to facilitate better communication and mutual assistance among local people in various provinces and cities. To this end, we held a volunteer service incubation conference in Changsha in October to provide comprehensive training for volunteers to improve their service levels.
Highlight 3: We are committed to expanding the influence of HAE through various media platforms, official accounts, and celebrities. We have opened official accounts in TikTok, WeChat, Xiaohongshu, Bilibili, and other major social media to publish content and disseminate HAE knowledge continuously. In September of this year, the Illness Challenge Foundation, together with the Chinese HAE Care Center, launched the HAE theme activity “Urgent search for people, looking for a potentially fatal swelling” on TikTok and invited dozens of stars to participate, helping more potential patients to understand HAE as soon as possible, calling on all sectors of society to pay attention to HAE and care for HAE patients.
In 2024, we will continue to organize more activities online and offline, continue to speak out, expand the scope of organizational influence, and let more and more people know about the existence of HAE so that more and more patients can get effective help.
