Rare Aware
This podcast is dedicated to raising awareness and sharing the voices of people living with rare disorders in New Zealand.
Around one in seventeen New Zealanders are affected by a rare condition. For many, finding answers and support can take years.
Here, we speak with individuals, families, and experts to help build greater understanding, connection, and support for the rare disorder community.
Thank you for listening and for being part of the Rare Aware journey.
For more information, visit www.raredisorders.org.nz
Rare Aware
The Power of Advocacy- James McGoram
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.
James opens up about the challenges of navigating the health system, what inspired him to get involved with RDNZ, and the progress he’s seen over his six years as Chair.
We’ll also unpack what advocacy really means, why it’s so vital for people living with rare disorders, and how each of us can play a role in driving change.
Stay tuned — this is a powerful conversation about resilience, community, and the difference one voice can make.
