Rare disorders research is more than just numbers, it's about people - Lisa Underwood

Rare disorders research is more than just numbers, it's about people - Lisa Underwood

In this episode of Rare Aware, we sit down with Lisa Underwood — health researcher, advocate, and a dedicated voice in the Tuberous Sclerosis Complex community. Lisa shares her journey into rare disorder research, the realities families face, and what she’s uncovering through her work in the Rare Disorders NZ research network. We dive into the challenges, the gaps, the moments of hope, and the power of lived experience guiding real change. Whether you’re part of the rare community, a supporter, or simply curious, this conversation sheds light on why understanding rare disorders matters more than ever. A warm, insightful, and empowering kōrero you won’t want to miss. Support the show [https://www.buzzsprout.com/2546745/support] Thank you so much for listening to this episode of Rare Aware. If you would like to learn more about rare disorders in New Zealand go to our website [https://raredisorders.org.nz/] or follow us on Facebook [https://www.facebook.com/RareDisordersNZ], Instagram [https://www.instagram.com/raredisorders_nz/]or LinkedIn [https://nz.linkedin.com/company/raredisordersnz].

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. Support the show [https://www.buzzsprout.com/2546745/support] Thank you so much for listening to this episode of Rare Aware. If you would like to learn more about rare disorders in New Zealand go to our website [https://raredisorders.org.nz/] or follow us on Facebook [https://www.facebook.com/RareDisordersNZ], Instagram [https://www.instagram.com/raredisorders_nz/]or LinkedIn [https://nz.linkedin.com/company/raredisordersnz].