About hae hk
關於HAE遺傳性血管性水腫病人組織(香港)
The Hong Kong HAE Patient Group (“hae hk”) has been formed in 2019 to support patients with hereditary angioedema (“HAE”) and their families to create awareness, provide education, and gain access to modern treatments so that HAE patients can enjoy a higher quality of life.
遺傳性血管性水腫病人組織 (香港) 有限公司 (“hae hk”) 成立於2019年，旨在支援遺傳性血管性水腫（“HAE”） 病人及其家人，以提高認識，提供教育，探索現代治療，以便HAE病人能夠享受更高的生活質素。
HAE is a very rare genetic and potentially life-threatening disease that occurs in about 1 in 50,000 people. It is caused by C1 esterase inhibitor deficiencies in the body.
HAE是一種可以危害生命的罕有遺傳疾病，約在50,000人中便有一個個案。 它是由體內C1酯酶抑制蛋白缺乏或功能異常引致的。
HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face and airway. In some cases, abdominal pain, nausea, and vomiting can result by swelling in the intestinal wall.
HAE症狀包括身體各種部位（包括手，腳，面部和氣道）的水腫（腫脹）發作。 在某些情況下，腸壁腫脹會導致腹痛，噁心和嘔吐, 情況可持續數天。
Airway swelling is particularly dangerous and can lead to death by asphyxiation.
當患者發生喉頭水腫時特別危險，可能導致窒息死亡。
hae hk has been dedicated to ensuring that free medications are accessible to all individuals in Hong Kong. As of the time of writing, Hong Kong now provides complete reimbursement for all on-demand medications for HAE, such as C1-inhibitor replacement and Icatibant. This means that patients can obtain these medications promptly without the need to “save up”. hae hk remains committed to further facilitating patient access to modern medication including preventative medications for all individuals.
hae hk 致力確保香港所有患者都能獲得免費藥物。在撰寫本文時，香港現已對HAE患者近乎免費提供即時治療的所需藥物（如C1補充劑和抑制劑替代品Icatibant）。這意味著患者可以迅速獲得對症下藥的治療。hae hk 仍致力進一步促進患者獲得現代藥物，包括預防性藥物。
hae hk aims to achieve optimal standards of care and treatment for all people affected by HAE living in Hong Kong so that they too can live a fulfilled and higher quality of life.
hae hk的目標是為所有受HAE影響的人士提供最佳的護理和適當治療資訊，使他們能擁有更充實及高質的生活。
If you wish to know more about hae hk, or wish to join our patient support group as a member, please contact us at hkhaepatientgroup@gmail.com.
如果您想了解更多關於hae hk的信息，或希望加入我們的患者支援小組，請通過hkhaepatientgroup@gmail.com與我們聯繫。
Become a Member
成為會員
我們歡迎你加入遺傳性血管性水腫病人組織(香港)有限公司會員册成為一份子。作為遺傳性血管性水腫病人組織(香港)有限公司會員，你可以參加我們開辨有關遺傳性水腫的“醫生與病人支援小組”，和各類形我會將會舉辨的活動。請你填寫以下申請表。
We cordially invite you to join the Hong Kong HAE Patient Group (“hae hk”) Membership Database. As a member of hae hk, you will be part of a local community of HAE patients, and gain access to resources about HAE and be eligible to participate in patients/doctors support groups and events and activities organized by hae hk and other patient support groups. You can join hae hk’s membership by completing and signing this Membership Form.
你填寫的所有資料都會保密。 * 項目必須填寫
Your information will be held in strict confidentiality. * denotes mandatory fields
Member benefits 會員權利
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Connect with others/ 與其他人保持聯繫
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Support and advice/ 支持和建議
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Access the latest information and news/ 獲取最新信息和資訊
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Invitations to events and seminars / 邀請參加活動和研討會