Adults & Ageing with Fragile X syndrome: Australian study

July 13th, 2023

Dr Mary-Ann O’Donovan PhD, Executive Director of the Centre for Disability Studies (research affiliate of University of Sydney), presented at the FX Research Roundup webinar, 13 July 2023.

Profiling a joint study to be undertaken by Fragile X Association of Australia and Centre for Disability Studies in 2024-2026.
This will be the first Australian study of adults living with Fragile X syndrome. From early 2024, this study will:

o  Explore the need for and effectiveness of supports for the ADULTS, particularly those in residential care / group home settings
o  Explore the need for and effective supports for CARERS of the adults living at home, eg supports for future care planning and transition in later life
o  Produce best practice information resources and care strategies for the disability and aged care workforce
o  Generate recommendations and advocate for health policy and practice improvements.

Watch the video recording of the presentation on our youtube channel:



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