Episode 2: Rare disorders research is more than just numbers, it's about people

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.