In this episode of Rare Aware, we sit down with Denise Astill who was made an Officer of the New Zealand Order of Merit (ONZM) in the 2025 New Year Honours for her services to the prevention of foetal anticonvulsant syndromes.

Her story starts at the age of 16 when diagnosed with epilepsy. Denise never thought that years later her anti-seizure medicine would have such devastating results with lifelong consequences. Her very much wanted and planned IVF babies were harmed by her antiseizure medicine (valproate) during pregnancy.

Having daughters with Foetal Valproate Spectrum Disorder Denise decided a change needed to happen so childbearing people wouldn’t go through the heartache and heartbreak of having their babies harmed by anti-seizure medicines during pregnancy. This is why she formed Foetal Anti-Convulsant Syndrome NZ.

Did they know back then that the antiseizure medicine would cause harm to a baby? Is it just her daughters that have been harmed or is it other whānau too?

Listen to Denise's journey and the incredible work she has done for whānau in New Zealand.

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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.

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.

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.