Rare Aware

Alanna Peck - Engagement at Rare Disorders NZ

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

에피소드

  1. 2025. 12. 07.

    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 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.

    1시간 4분

  2. 2025. 10. 21.

    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 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.

    56분
  • 2개의 에피소드

소개

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

정보

  • 제작진
    Alanna Peck - Engagement at Rare Disorders NZ
  • 방송 연도
    2025년
  • 에피소드
    2
  • 등급
    전체 연령 사용가
  • 저작권
    © 2026 Rare Aware
  • 웹사이트 보기
    Rare Aware