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.


World Fragile X Day!

World Fragile X Day: 22 July: Celebrating individuals and families who are living with Fragile X and acknowledging the work being done to ensure early diagnosis and future treatments.

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