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The Patient Voice Podcast
The Patient Voice Initiative
12 episodes
3 months ago
Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.&n...
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Medicine
Education,
Health & Fitness
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Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.&n...
Show more...
Medicine
Education,
Health & Fitness
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Loss, lessons, and a lifelong legacy - Rachael Casella's story
The Patient Voice Podcast
47 minutes
3 years ago
Loss, lessons, and a lifelong legacy - Rachael Casella's story
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 pregnan...
The Patient Voice Podcast
Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.&n...