Our voices 002


The purpose of this survey was to collect much-needed data on what it means to live with a rare disorder in New Zealand in 2021.

The survey was open from 3. November until 8. December 2021.

Anyone living with a rare disorder in New Zealand was strongly encouraged to take part, as well their whānau and carers. 

The data from this survey will be used in advocacy work for the rare disorder community in NZ, with a focus on highlighting the impact of living with a rare disorder and improving access to treatments and health services.

We look forward to sharing the survey results and White Paper on Rare Disease Day - 28 February 2022.

Why does RDNZ carry out these surveys?

As the Ministry of Health does not collect comprehensive rare disorder data, we have taken it upon ourselves to fill this vital data gap in the health system through our bi-annual surveys.

In 2019, we launched our inaugural Voice of Rare Disorders survey, and the data we collected has been used to advocate directly with the Minister of Health, health officials, Pharmac and MPs, and through all areas of our work. Our ongoing Fair for Rare campaign is a direct result of that survey.

Why is the data so important?

There is a broad range of areas where the 2019 Rare Disorder Survey and white paper have been extremely valuable, such as: 

  • Minister of Health, Andrew Little
  • Ministry of Health quarterly meetings which include a wide remit from across Ministries, including Ministry of Education, Ministry of Health, Data and Digital team, Mental Health, Primary care, Māori and Pacifica Ministry of Health officials, Newborn Screening unit etc
  • Health Select Committee
  • Pharmac
  • Health, Wellbeing, Social Services Caucus Committee
  • 40 MPs visited either directly or through our community
  • 24 International meetings RDNZ has attended and used the data as supporting information
  • Health and Disability Commissioner, Paula Tesoriero 
  • Rare Disorder media stories 
  • Ministry of Education
  • Pharmac review Panel
  • Royal NZ College of GPs and the New Zealand Medical Association
  • Asia Pacific Alliance of Rare Disease Organisations (APARDO)
  • Mental Health Working Group for Australasia
  • Carers Alliance, Genetic Alliance, Neurological Alliance

If you have any questions about the survey, please contact Kim.

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