Episode 1: The Power of Advocacy

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.