New Zealand

In brief

  • Name for organization: HAE Australasia (Australia and New Zealand)
  • Patient group started in 2010 – now HAE Australasia (2013)
  • 38 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Icatibant – for acute attacks (ages 2 and above)

Fun facts

  • New Zealand was the first country in the world to grant women the right to vote, this occurred in 1893
  • New Zealand is home to the longest English name being for a mountain called TAUMATAWHAKATANGI HANGAKOAUAUOTAMATEA POKAIWHENUAKITANATAHU
  • The first person to conquer the summit of Mount Everest was a New Zealander – Sir Edmund Hillary who climbed Mount Everest in 1953

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

The positive changes for people with HAE in Australasia are – access to modern treatments for prevention and acute attacks in Australia and access to acute treatment for New Zealand patients. Our organisation has held patient and carers conferences bringing together patients from around Australia and New Zealand to learn about HAE from local and international expert physicians, support, and get to know one another. 

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

HAE Australasia’s most significant achievement so far would be our organization’s success. We have played a significant role in patients getting funded access to treatments. We have done the work to bring patients and family members together, continue to create awareness and education amongst the community about HAE, and establish ourselves as the first point of reference for patients, their families and physicians.

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?

Over the years, we have held many events for education and awareness of HAE, from media campaigns to education sessions. However, our most recent resource for patients and the HAE community far and wide is our new ‘Living Well with HAE’ mental health videos and pdf resources.

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

HAEi helped HAE Australasia get started ten years ago this year! HAEi hosts our website, and we also use HAEi Connect. Although Australia and New Zealand are so far away from most of the world, we have had excellent attendance by our patients and family members at all HAEi Global Conferences in Europe and the USA.

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

HAE Australasia’s next step is gaining access to more treatments for patients in Australia and New Zealand. New Zealand does not have access to any funded prophylactic modern treatments at this stage, so we want to achieve this, so all patients have a much better quality of life soon.

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