Name for organization: The Hong Kong HAE Patient Group Limited
40 members at 1 Jan 2021
Name of approved HAE treatments:
A city in China with its own Olympic team!
What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened for people with HAE in Hong Kong are:
A dedicated patient group was established.
A centralized patient registry was created.
A team of dedicated medical practitioners was introduced into the public medical sector.
The public was made aware of HAE diagnosis and treatment through news media.
First medication to treat acute attacks was approved in Q1 2021.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE in Hong Kong was the establishment of a dedicated patient group for HAE in 2019.
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?
The activity we are most proud of organizing for people with HAE in Hong Kong is our group’s first Meet and Greet Event in November 2019. Over 30 patients, family members, and medical practitioners, gathered to talk about their experiences with HAE.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We used support from HAEi in relation to the creation and hosting of the hae hk website, the establishment of our organization and some publications.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
We wish to be able to achieve the following for people with HAE in Hong Kong by 2030:
Approval of at least 4 more medications which are freely accessible by all patients as a special drug recognised by the Hong Kong Government.
Continue to raise public awareness of HAE in terms of diagnosis and treatment.
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