Apr 27, 2023, 12:09 PM
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Rare disorders NZ and Manatū Hauora | the Ministry of Health are working together to promote rare disorders community input to key strategic work.

We have jointly hosted three events so far:

  • A hui of experts (both lived and professional expertise) that gave valuable insights on precision health – the topic for a long term insights briefing Manatū Hauora is working on.
  • Two webinars that were attended by some 70 people who gave rare disorders input for the Pae Ora strategies – six strategies that are required by the Pae Ora (Healthy Futures) Act 2022. The webinars gave voice to rare disorders issues and direct insights into people’s experiences, adding richness to other input including submissions made by RDNZ.

Long term insights briefings look 10 to 20 years into the future and are required every three years. They are a new requirement of chief executives of government departments, designed to put into the public domain information about medium- and long-term trends, risks, and opportunities that affect or may affect New Zealand and New Zealand society. The precision health long term insights briefing will be completed by August.

The Pae Ora strategies (NZ Health Strategy as well as strategies for Māori health, health of Pacific peoples, health of disabled people, rural health and women’s health) are being completed for publication in July.

This Rare Disorders NZ X Manatū Hauora colab has been fruitful and rated well by participants. More joint events are being planned over the coming months – this will be particularly valuable as work on a rare disorders strategy for New Zealand proceeds.

The Government announced the development of a rare disorders strategy in its response to the independent review of Pharmac. The first focus for Manatū Hauora was on the Pae Ora strategies as the changes being brought in through the Pae Ora Act were well aligned with the independent review panel’s recommendations for rare disorders.

As the Pae Ora Strategies are completed, Manatū Hauora is increasing its focus on a rare disorders strategy. The Government intends the strategy to make it easier for people, practitioners and organisations to get the information and support that would help - and lead to better, more timely services and more equitable support and outcomes for people and whānau with rare disorders. The strategy will seek to seize opportunities created through a more unified and consistent health system, advances in science and progress being made internationally. It will set a direction for work over coming years.

There will be many more joint events and activities over the coming year. We had positive feedback about webinars and surveys.

We’d appreciate if you could answer a very quick, one minute survey to let us know the best ways for you to provide input: https://www.surveymonkey.com/r/383X2SH

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