ABC RN Interview – Fragile X syndrome, with Dr Cynthia Roberts

July 24th, 2022

Dr Cynthia Roberts is a geneticist and parent of an adult son who lives with Fragile X syndrome.  She is a Board member of Fragile X Association of Australia.
On 22 July 2022 in an ABC RN interview Dr Roberts discussed why increased awareness of Fragile X matters, the importance of testing and screening programs for Fragile X disorders, and how understanding by the wider community of the impacts of Fragile X syndrome matters.

Audio available on ABC RN website

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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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