Ensuring that the voice of those with lived experience informs New Zealand's first Rare Disorders Strategy has been a cornerstone of the development of the strategy.
Rare Disorders NZ has consistently emphasised this necessity throughout the process to ensure the strategy is fit for purpose.
As a result, engagement with stakeholders is occuring on a number of levels:
A Reference Group, which includes Rare Disorders NZ, support group leads, Manatū Hauora and rare disorder specialists has been established to provide input and review draft documents;
Rare Disorders NZ have been having regular, weekly hui with Te Aka Whai Ora to plan how we will engage with whānau Māori to ensure that the voices of Māori living with a rare disorder are reflected in the Rare Disorders Strategy plan;
Manatū Hauora | Ministry of Health and Rare Disorders NZ jointly hosted a webinar for anyone from the rare disorders community to learn about the strategy development and have their say on what they would like included in the strategy (view the summary of input document from this webinar here, and the Q & A's from this webinar here);
Manatū Hauora | Ministry of Health and Rare Disorders NZ jointly hosted a webinar for support group leads to directly discuss their perspectives on the strategy to the Manatū Hauora team;
And the next step will be Manatū Hauora | Ministry of Health hosting a webinar with rare disorder specialists to gain their insights and expertise on the content of the strategy.