The Link between Fragile X and Primary Ovarian Insufficiency (POI) | 2-minutes

July 1st, 2017

Prof Rod Baber, former heard of the International Menopause Society, from short video recording webinar recording 2017.

25% of women who are carriers of Fragile X will undergo Primary Ovarian Insufficiency/early menopause. It is recommended that anyone has undiagnosed early menopause be screened for the FMR1 premutation.

Prof Rod Baber, University of Sydney, Royal North Shore Hospital, former head of the International Menopause Society, presented on early menopause at a Healthed Women’s & Children’s Health education day in 2017.
A concise extract of the presentation has been made available for the use of Fragile X Association of Australia.  With thanks to Dr Baber and Healthed.

Watch the video recording on our youtube channel: https://youtu.be/pXLq08P1neI

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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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