Leaving no-one behind: a RDNZ - Costello Medical collaboration

In March 2024 Rare Disorders New Zealand launched its Voice of Rare Disorders survey report “Impact for Whānau Māori of Living With a Rare Disorder in Aotearoa New Zealand”.

Unexpectedly the results for Māori were very similar to the wider NZ population of people living with a rare disorder, and we’ve taken this to indicate that Māori and people with rare disorders are both vulnerable population groups in their own right who are similarly marginalised from health and other support systems.

As we get on with implementing New Zealand’s Rare Disorders Strategy we want to ensure that Māori and whānau living with rare disorders are not left behind as things start to improve for people living with rare disorders generally.

To assist with this RDNZ has commissioned Costello Medical to undertake a more detailed comparison of the Māori vs non-Māori survey results, and to include the findings of Te Aka Whai Ora Whānau Voice 2023 Summary report.

Te ao Māori oversight is being provided by RDNZ tangata whenua Board trustees Awhina Hollis-English and Samantha La Hood, and we’re very grateful to Costello Medical for undertaking this work as part of their pro bono programme.

Chris Higgins recently caught up with the wonderful project team Kyra Chan, Jennifer Evans and Yan Ran Wee at Costello Medical for a valuable in person meeting, while on his way to Geneva to support RDI’s celebrating the imminent WHA resolution on rare diseases.