Open to 15 August – Survey for Families of Adults with Fragile X syndrome | Invitation to participate

July 1st, 2024

Fragile X Care | Adults & Ageing is the first Australian study on the support needs, health & wellbeing of adults with Fragile X syndrome as they age.  We’re undertaking this study in collaboration with Centre for Disability Studies, a not-for-profit research affiliate of the University of Sydney.  The study is supported by a philanthropic grant.
Our goal is to enhance quality of life for adults with Fragile X syndrome as they age.

INVITATION TO PARTICIPATE IN A SURVEY FOR FAMILY MEMBERS – OPEN TO AUGUST 15th

Parents or other members of a family of an adult (aged 18 or over) who has Fragile X syndrome are invited to participate.  The Survey will ask 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 for adults with Fragile X syndrome, and
  4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care.

=> Please read the Participant Information Sheet for more information about the survey, and how the results will be used: FX Survey_Participant Information Statement_Families

Click Here to Participate in Online Survey

CONTACT US TO REQUEST A PAPER VERSION OR TO REQUEST A PHONE SURVEY

    Contact Us

     

    Or you can contact us by EMAIL  support@fragilex.org.au  OR by PHONE   1300 394 636


    This survey will assist in gathering information that will help us:
    1.    Build a picture of the current and future needs of adults with Fragile X syndrome in Australia
    2.    Understand any gaps in supports or services
    3.    Create free online education resources for disability, aged care & health teams about Fragile X syndrome
    4.   Advocate for policy and practice developments across relevant support and care settings.


    SURVEY FOR DISABILITY SUPPORT AND AGED CARE TEAMS AND HEALTH PROFESSIONALS

    People whose work involved providing disability, aged care or health support to adults with Fragile X syndrome are invited to participate.  This includes disability support workers, therapists, aged care staff, health professionals -who might be employed by organisations, or work independently.

    To participate in that Survey, click here.


    We’re so pleased to be undertaking this important study in collaboration with Centre for Disability Studies (CDS), a team with tremendous experience in the area of intellectual disability and ageing.

    The Fragile X Care | Adults & Ageing Study has received approval from the Human Research Ethics Committee of University of Sydney.

    The work has been made possible by a philanthropic grant from the HENROTH Group, for which Fragile X Association of Australia is deeply thankful.

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    Support Fragile X Association of Australia

    Your generous donation will help FXAA ensure people living with Fragile X are connected, included, understood and empowered. Specifically, your donation will help us maintain and deliver support and connections to the Fragile X community around Australia: 1. Counselling support 2. FXAA Helpline - available 5 days per week - 1300 394 636 3. Webinar program 4. Peer connection and referrals 5. Advocacy work – for example, our Fragile X Care | Adults & Ageing research study. This is the first Australian study on the support needs, health & wellbeing of adults with Fragile X syndrome as they age. All support is sincerely appreciated and helps us make a difference for the Fragile X community.

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