News & Events

Webinar recording | Understanding Anxiety & Behaviours in Fragile X syndrome

November 21st, 2023

Webinar recording from 11 November 2023 - Dr Marcia Braden PhD licensed psychologist speaking on Anxiety and Behaviours in Fragile X syndrome.   Addressing what lies behind the anxiety experienced by many children with Fragile X syndrome, how the anxiety impacts daily living, learning and behaviours, and practical strategies that can be put in place to best support the person with Fragile X syndrome.

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Medicare funded – Reproductive Genetic Carrier Testing for Fragile X syndrome, Cystic Fibrosis and Spinal Muscular Atrophy

October 27th, 2023

1 in 20 people carry a gene change for Cystic Fi­brosis (CF), Fragile X syndrome (FXS), or Spinal Muscular Atrophy (SMA), and most are unaware that they are carriers. arrier screening is a genetic test that can tell people if they have an increased chance of having children with an inherited genetic condition. From 1st November 2023, there will be a new Medicare item number that will cover reproductive genetic carrier testing for Cystic Fibrosis, Fragile X syndrome and Spinal Muscular Atrophy for people planning a pregnancy or in early pregnancy.

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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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