From Sandy Chan, HAE HK:
HAE HK was formed in August 2019 by patients in Hong Kong with HAE and incorporated as a limited company in Hong Kong on 7 November 2019. Tax exemption will be applied.
HAE HK aims to achieve optimal standards of care and treatment for all people affected by HAE living in Hong Kong so that HAE patients can live a fulfilled and higher quality of life by:
- raising awareness of HAE and educating doctors and the public
- providing support to HAE patients and families
- advocating for access to modern treatments
The organization is composed of patients, patients’ families/friends/carers, doctors and interested individuals. At this stage, a person can join for no membership fee. HAE HK currently has about 25 members.
A committee consisting of four patient members (Ms. Mana Chan, Mr. Davy Wong, Ms. Rachel Kwan and myself) carry out the day-to-day operations. Of the four known immunology specialists in Hong Kong, two (Dr. Philip Li and Dr. Jane Wong, Division of Rheumatology & Clinical Department of Medicine, Queen Mary Hospital) are our consultants and offer expert advice and help drive diagnosis and access to treatment aligned with our mission.
All committee members and consultants have their own full time jobs, and contribute their personal time to HAE HK on a voluntary non-remunerated basis.
HAE HK is a member of HAE International, meaning that we can draw on the robust resources available, e.g. website domain, online membership database, and patient self-help tools.
Some of HAE HK’s committee members are members of the Hong Kong Rare Disease Alliance (HKARD). We can benefit from HKARD’s existing public/medical channels and platforms to raise public awareness about HAE, and in turn, advocate for access to modern treatments for HAE patients.
Here are some of the things that HSE HK has done in 2019:
- August 2019: Created and launched www.facebook.com/haehongkong, maintained by committee members on a voluntary basis
- September 2019: Published our first leaflet providing information about HAE and HAE HK – written by committee members on a voluntary basis and designed and printed by CSL Behring at no costs to HAE HK – 2,000 copies were printed in the first run
- September 2019: Committee representatives of HAE HK presented our story to HAE patients of China at the 2019 China Rare Disease Summit in Shenzhen – committee members attended this event on a voluntary, self-funded basis
- September 2019: We shared the first video of “My personal experience with HAE” – created on a voluntary basis by a committee member
- October 2019: We attended a public talk organized by Allergy HK to distribute leaflets about HAE and HAE HK and answer questions
- November 2019: Dr. Li and a volunteer HAE patient were interviewed by RTHK – the interview will be aired on TVB in December 2019
- November 2019: We hosted our first “Mix&Mingle” event at Habitu Table which was free of charge for all attendees – Dr. Li updated patients on the latest developments about HAE in Hong Kong and Dr. Wong explained to patients about the importance of the family screening process – fully sponsored by CSL Behring
- December 2019: An article written by Dr. Li and Dr. Wong highlighting the differences between HAE and allergy will be published by Allergy HK in its Dec 2019 Newsletter – together with the HAE HK leaflet the newsletter will be distributed to all 2,000+ Allergy HK members in electronic and hardcopy forms
- December 2019: HAE HK will launch its own website created with the help of and hosted by HAE International HAE HK has chosen to have HAE International host their website – have a look at https://haehk.haei.org.