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Your donation will help us support the Fragile X community, and increase understanding of Fragile X-associated conditions.

Donate to support our ongoing services and activities:

  • Helpline 1300 394 636¬† operating 5 days per week 9:00am – 5:00pm (Australian Eastern time)
  • Family support counselling and referrals
  • Peer support
  • Webinars¬† & podcasts on Fragile X syndrome and FX Premutation Associated Conditions
  • Information resources
  • Website, Social media, Facebook discussion groups
  • Increasing awareness of Fragile X
  • Education about Fragile X
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Donation Total: $50.00 One Time

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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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