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Rare Aware

Rare Aware

By: Alanna Peck - Engagement at Rare Disorders NZ
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About this listen

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

© 2025 Rare Aware Hygiene & Healthy Living Social Sciences
Episodes
  • 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
    Dec 7 2025

    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

    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 or follow us on Facebook, Instagram or LinkedIn.
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    1 hr and 4 mins
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