The Patient Voice Podcast
Our aim at Patient Voice Initiative is to ensure patient voices are seen, heard and valued in the Australian health system. But what is the patient voice and why is it important?Join us as we explore real experiences of health and healthcare through the people who most depend on it and how these stories can help us build better care for all.The podcast is hosted by the Patient Voice Initiative Chair and patient advocate, Jessica Bean, which means it is an opportunity to hear patients in discussion with another patient, rather than responding to questions from someone who does not live with the daily experience of being a patient.
The Patient Voice Podcast
Loss, lessons, and a lifelong legacy - Rachael Casella's story
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The Patient Voice Initiative
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Season 1
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Episode 3
With Rare Disease Day coming up on the 28th of February, The Patient Voice Podcast is proud to share Rachael Casella’s story.
Rachael is a campaigner and activist for genetic carrier screening, IVF education, and reproductive health. After losing her daughter Mackenzie at just 7 months old to spinal muscular atrophy type 1 (SMA), Rachael realised that genetic carrier screening could have identified the risk of this sooner, if only it had been offered to her and her husband during her pregnancy.
She has now dedicated her life - and her daughter’s legacy - to helping other parents access genetic carrier screening.
As an investigator with Mackenzie’s Mission, a research project for genetic carrier screening, and author of Mackenzie’s Mission, Rachael is a powerful force in the advocacy space.
Her dedication and commitment under circumstances that most find unimaginable, is breathtaking.