In brief

  • Name for organization: HAE Taiwan
  • 16 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Danazol
    • Icatibant (Firazyr®)

Fun facts/interesting things about Taiwan

  • Lots of delicious snacks.
  • Cheaper to see a doctor.
  • Because Taiwan is small, the transportation is convenient, and it is convenient to travel anywhere.

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

More and more people are aware of HAE, and more and more patients are diagnosed.

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

The health insurance passed the drug icatibant (Firazyr®), which makes our lives more secure.

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?

I think what I am most proud of is that we have a doctor who is very enthusiastic and helpful, Dr. Shyur.

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

HAEi helped us set up this small group, helped us contact the Taiwan Foundation For Rare Disease and Taiwan Takeda, resources that can help us develop better.

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

Cooperating with Dr. Shyur, I hope to successfully introduce new drugs to the health insurance, so that we can get away from Danazol.

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