Aug 8, 2023, 11:15 PM
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Manatū Hauora - Ministry of Health has sought feedback from Rare Disorders NZ, along with other members of the Ministry’s strategy reference group, on the consultation draft of the Rare Disorders Strategy document

RDNZ welcomes Manatū Hauora’s initial Rare Disorders Strategy (RDS) document, and appreciates the opportunity to contribute both as a member of the RDS reference group and as a co-designing partner.

We see the RDS as a breakthrough opportunity to significantly improve health and other outcomes for New Zealanders living with rare disorders. We expect the RDS to result in improved access to health and other services and opportunities and to enable people living with rare disorders to experience pae ora and healthy futures on their terms and as promised for all New Zealanders by the health reforms legislation.

In preparing our response we have elicited feedback from rare disorders support groups, from the RDNZ Board, and collectively from RDNZ staff.

View the body of Rare Disorders NZ's response here. (This version excludes the appendices, and in confidence quotes have been removed.)

View Rare Disorders NZ's second submission, responding to the revised version of the framework document,  here.

Back to Rare Disorders Strategy progress