Useful Links

Fragile X clinics in Australia

Fragile X Alliance Clinic, Melbourne

Fragile X clinic in Melbourne which offers a multidisciplinary clinic several times a year, and offers individual appointments for children and adults affected by Fragile X. The medical director of the Fragile X Alliance Clinic within the Caulfield Family Medical Practice is Dr Jonathan Cohen, who is a general practitioner and Fragile X specialist. Dr Cohen sees patients of all ages who have Fragile X syndrome, and sees Fragile X premutation carriers who have health concerns. The clinic is located in North Caulfield. (03) 9528 1910

FXTAS Clinics

Sydney: St Vincent’s Hospital, Darlinghurst

Melbourne: AlfredHealth, Caulfield Hospital

General genetics clinics

Public genetics clinics across Australia for queries on Fragile X testing and genetic counselling.

International information resources about Fragile X

National Fragile X Foundation (US) – NFXF

The NFXF provides support, information and advocacy to families in the US who are impacted by Fragile X syndrome. NFXF has an extremely comprehensive website with information resources for individuals, families and health professionals on Fragile X-associated disorders including Fragile X syndrome, FXPOI, FXTAS and on health perspectives for carriers of the Fragile X premutation.

Useful links:

Treatment guidelines and recommendations (consensus documents) on a wide range of topics related to all Fragile X conditions

Fragile X syndrome resources by age group, covering education, behaviours and life strategies

Fragile X Society (UK): The Fragile X Society website has a number of excellent short videos about Fragile X syndrome. It also has downloadable booklets and pamphlets on a range of topics including educational strategies for children with Fragile X syndrome, “I Have Fragile X syndrome”, and pamphlets on FXPOI and FXTAS. The site also provides access to a Fragile X online training course for professionals.

International Fragile X Alliance: List of Fragile X organisations world wide.


We're fundraising for our Family Support service!

The spectacular Bridge to Beach paddle race raises funds to help us support, connect and advocate for families around Australia! You can make a difference for the Fragile X community by making a donation to our Bridge to Beach campaign today! Donations of $2.00 and over are tax deductible.

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