This input is dated May 2021

In brief

  • Name for organization: Swift Vascular Edema Care Center
  • 160 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Danazol

Fun/interesting facts

  • In China, people usually greet each other by asking, “Have you eaten yet?” instead of” Hello!”
  • Despite its size, China uses one time zone throughout its territory, a rarity for a large country.
  • There are blind date fairs in China, such as the blind date corner in Shanghai’s People’s Square, where parents list information about their children, such as age, occupation, income, real estate, etc., and the couple can meet for the first time if they think it’s appropriate.

What positive changes have happened for people with HAE, in your country, from 2012 to now?

  1. The number of people joining the Chinese mainland HAE WeChat group has grown from 126 to 160 now
  2. In the past, there was only one expert HAE doctor from Peking Union Medical College, but after the master training class, more doctors know about HAE. Now there are also doctors in Shanghai and Hangzhou.

What is the biggest achievement for people with HAE, in your country, from 2012 to now?

  1. In September 2017, HAE organization in mainland China which is named “Swift Vascular Edema Care Center” was established
  2. Create the HAE WeChat official account and Weibo, and design the HAE publicity page used in Chinese mainland;
  3. Monoclonal antibody (mAb) drugs for HAE are approved in 2020. Patients have not yet used it.

What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?

  1. Since its establishment three years ago, the organization has held three offline doctor-patient exchanges and two online exchanges, which have achieved great success
  2. The organization won the seed award of the First Rare Diseases Public Welfare Innovation Competition
  3. In the “rare diseases warm heart popular science” the 51 st issue published HAE popular science cartoon
  4. Assisted in the creation of “swollen duck chasing evil” popular science comics, introducing HAE knowledge
  5. Participated in the creation of the lyrics of HAE’s “Song of Life”
  6. On the International Rare Diseases Day in 2020, Principal Zhang Nan was interviewed by Health Times, Tencent News and sohu News, and won the title of “Rare Star” in Takeda
  7. Zhang Nan and Xu Yao, members of the organization, participated in the Hong Kong HAE patient exchange meeting in 2019

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

  1. Ms. Fiona, a leader of HAEi International, and others have participated in two offline doctor-patient communication meetings, which let us know the treatment, medication and living status of HAEi patients abroad
  2. Zhang Nan and Gao Yuting, members of the organization, joined the expert committee of HAE patients in the Asia-Pacific region
  3. Got HAEi medical aid cards
  4. Zhang Nan and Xu Yao, the members of the organization, participated in two sessions of the International Doctor-Patient Exchange Committee respectively

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

  1. All patients have specific drugs available
  2. There are HAE professional doctors in each area to improve the diagnosis rate of HAE
  3. To improve the society’s tolerance for HAE patients and improve the quality of life of HAE patients