Nonprofit Organization Management - , Prince Edward Island, Canada
We're a not-for-profit organisation and registered charity, supporting the Fragile X community. Since 1989 we've been working towards the best possible lives for families throughout Australia affected by Fragile X.We provide support and services to to people impacted by Fragile X syndrome or Fragile X-associated disorders, and their families and carers. We provide information, helpline, free counselling, advocacy, referrals, educational workshops, and we facilitate access to clinics. We also work towards increasing awareness and understanding of Fragile X in the medical, allied health, special education and disability services sectors with the goal of securing early diagnosis and early interventions for Fragile X conditions. Fragile X syndrome is the leading cause of inherited intellectual disability and most common single gene cause of autism. It is caused by a mutation of the FMR1 gene on the X chromosome. Carriers of the Fragile X gene mutation can be at risk of developing associated conditions; FXTAS (FX-associated Tremor Ataxia syndrome, often misdiagnosed as Parkinson's disease), and FXPOI (FX-related Primary Ovarian Insufficiency, which leads to early menopause). An estimated 90,000 Australians are impacted by Fragile X in some way.
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