Search Results - "Ferrie, Monica"

Living with a genetic, undiagnosed or rare disease: A longitudinal journalling study through the COVID‐19 pandemic by Byun, Malia, Feller, Hollie, Ferrie, Monica, Best, Stephanie

“…Introduction COVID‐19 changed the way we lived with uncertainty from the outset as the pandemic impacted every aspect of our lives from well‐being, socializing…”
Get full text

Gene therapy-based strategies for spinal muscular atrophy—an Asia-Pacific perspective by Farrar, Michelle A., Calotes-Castillo, Loudella, De Silva, Ranil, Barclay, Peter, Attwood, Lani, Cini, Julie, Ferrie, Monica, Kariyawasam, Didu S.

“…Onasemnogene abeparvovec has been life-changing for children with spinal muscular atrophy (SMA), signifying the potential and progress occurring in gene- and…”
Get full text

Who's on your genomics research team? Consumer experiences from Australia by Ferrie, Monica, Fehlberg, Zoe, Best, Stephanie

Get full text

Co-designing interventions to ‘live well’: experiences and perceptions of the Genetic, Undiagnosed and Rare Disease (GUaRD) community by Beadell, Inez, Byun, Malia, Feller, Hollie, Ferrie, Monica, Best, Stephanie

“…The Genetic, Undiagnosed and Rare Disease community faces a range of hurdles to live their ‘best life’ including physical, social and psychological barriers…”
Get full text

The Australian Reproductive Genetic Carrier Screening Project (Mackenzie's Mission): Design and Implementation by Archibald, Alison D, McClaren, Belinda J, Caruana, Jade, Tutty, Erin, King, Emily A, Halliday, Jane L, Best, Stephanie, Kanga-Parabia, Anaita, Bennetts, Bruce H, Cliffe, Corrina C, Madelli, Evanthia O, Ho, Gladys, Liebelt, Jan, Long, Janet C, Braithwaite, Jeffrey, Kennedy, Jillian, Massie, John, Emery, Jon D, McGaughran, Julie, Marum, Justine E, Boggs, Kirsten, Barlow-Stewart, Kristine, Burnett, Leslie, Dive, Lisa, Freeman, Lucinda, Davis, Mark R, Downes, Martin J, Wallis, Mathew, Ferrie, Monica M, Pachter, Nicholas, Scuffham, Paul A, Casella, Rachael, Allcock, Richard J N, Ong, Royston, Edwards, Samantha, Righetti, Sarah, Lunke, Sebastian, Lewis, Sharon, Walker, Susan P, Boughtwood, Tiffany F, Hardy, Tristan, Newson, Ainsley J, Kirk, Edwin P, Laing, Nigel G, Delatycki, Martin B, The Mackenzie's Mission Study Team

“…Reproductive genetic carrier screening (RGCS) provides people with information about their chance of having children with autosomal recessive or X-linked…”
Get full text