Why do Health Professionals need to know about Fragile X?

Sorry! This section of our website is still under construction.

But in the meantime you can find several video resources and links to information about testing and diagnosis for Fragile X-associated disorders on our partner page on the ThinkGP CPD education platform for health professionals: https://thinkgp.com.au/fragilex

Otherwise please contact us directly for information or references about Fragile X syndrome, FXPOI, FXTAS or other Fragile X-associated conditions.

Call: 1300 394 636 (cost of a local call)

Email: support@fragilex.org.au


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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