Since the last magazine, there has been a focus on a few projects; a couple of these were the hae day :-) “Let’s Take the Next Steps” campaign and rolling out of the Regional Medical Advisory Panel project. All the member organizations within the Asia Pacific region had their history and plans for the [...]
This input is dated May 2021 >> View content in 中文 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 [...]
During the past few months, I have been working with member organizations in my region to nominate physicians for the Regional Medical Advisory Panel (RMAP) project. I am pleased with the confirmation from the nominated doctors who have accepted to be panelists. I look forward to holding the first RMAP meeting in the next [...]
From HAE China Winner of seed fund: April 2020, the first public benefit innovation competition for rare diseases was officially launched. Through online courses, an offline entrepreneurship camp and project supervision, rare disease organizations are helped to improve their overall operation ability, incubate high-quality, innovative projects and provide financial support. The bottom line is [...]
The past few months have been busy in the Asia Pacific region with some exciting projects going on with the member organizations. I always enjoy catching up with each of the patient leads from all the member organizations to discuss plans and how to create awareness and education opportunities and build their capacity. I [...]
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 [...]
HAEi has recently registered the first HAE knowledgeable physician and hospital in China: Prof. Yuxiang Zhi, Peking Union Medical College Hospital in Beijing. The professor can be contacted via telephone 0086 13426303007 and email moc.621@ihz_gnaixuy.