Understanding Fragile X | classic explainer, audio from original video (2012)

February 14th, 2024

Produced by Fragile X Association of Australia in 2012, the 30-minute video “Understanding Fragile X”remains our classic “explainer” resource about Fragile X syndrome.

Presenters include:  Prof Randi Hagerman (UC Davis MIND Institute, California), Dr Natalie Silove (Westmead Children’s Hospital, Sydney), Mandy Croft (occupational therapist), and Dr Jonathan Cohen MD (Medical Director, Fragile X Alliance Clinic, Melbourne), together with several families who share their experience of receiving a diagnosis of Fragile X syndrome.

This video was produced with the support of a grant from the St George Foundation.

Watch the video on our youtube channel: https://youtu.be/sIAWbUJUQuU

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Survey for parents / carers of adults with Fragile X syndrome

FRAGILE X | ADULTS & AGEING. We're undertaking the first Australian study on the support needs, health & wellbeing of ADULTS with Fragile X syndrome. Our goal is to enhance quality of life for adults with Fragile X syndrome as they age. We invite parents or carers to participate in our SURVEY. The survey has questions about: 1. GENERAL HEALTH AND WELLBEING of the adult with Fragile X syndrome. 2. EFFECTIVENESS OF EXISTING SUPPORTS for the adult with Fragile X syndrome as they age. 3. FUTURE PLANNING concerns of families & carers who provide support 4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care. From the information contributed through the Survey we will develop training modules for frontline carers and tools for advocacy. The Survey can be completed ONLINE, in PAPER FORM, or by PHONE. Contact us for more information - support@fragilex.org.au or 1300 394 636

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