Podcast series

Rare Disorders NZ is proud to introduce our new podcast series, Rare Aware, hosted by Alanna Peck.

Through this series Alanna will be exploring what it means to live with a rare disorder in Aotearoa New Zealand and how individuals and families navigate the journey. She will also be speaking with experts about what work is being done to make New Zealand a better place for the rare disorder community.

We hope this podcast will help build greater understanding, connection, and support for the rare disorder community.

You can access the podcast here or from any major podcast platform.

Episode 1: The Power of Advocacy

4 Dec 2025

In this episode of Rare Aware, we explore the power of advocacy — and just how far we’ve come in New Zealand. We’re joined by James McGoram, Chair of the Board for Rare Disorders NZ, who shares his personal journey from receiving a rare diagnosis to becoming a passionate advocate for change.

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more