Adults & Ageing with Fragile X syndrome: national study (Dr Mary-Ann O’Donovan PhD)

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Fragile X Australia Podcast

Alba Prime

43 episodes

1 month ago

Fragile X Association of Australia is a member-based organisation which serves as the peak body for the Fragile X community across Australia.

We offer information, support, education, advocacy and referrals to individuals who are impacted by Fragile X-associated disorders and to their families, carers and health and disability service providers.

Visit http://fragilex.org.au

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Adults & Ageing with Fragile X syndrome: national study (Dr Mary-Ann O’Donovan PhD)

Fragile X Australia Podcast

16 minutes

2 years ago

Adults & Ageing with Fragile X syndrome: national study (Dr Mary-Ann O’Donovan PhD)

Announcing the first Australian study of adults living with Fragile X syndrome. From early 2024, our collaboration with Centre for Disability Studies (at University of Sydney) will:
* Explore the need for and effectiveness of supports for the ADULTS, particularly those in residential care / group home settings
* 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
* Produce best practice information resources and care strategies for the disability and aged care workforce
* Generate recommendations and advocate for health policy and practice improvements.
From our FX Research Roundup webinar 13 July 2023.