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Links & Resources

Fragile X Workshop 23 September 2011

Learn more about Fragile X with International FXS expert Louise Gane and Sensory Regulation with Occupational Therapist Kate Skinner.

Louise Gane – Fragile X Syndrome Presentation: 1, 2, 3, 4

Kate Skinner – Sensory Regulation Presentation: Kate’s Sensory Modulation, Sensory Rich activities

Links

The two most useful sources of online information on Fragile X Syndrome are:

The National Fragile X Foundation website. This US-based foundation aims to unite the fragile X community through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome

FRAXA Research Foundation website. This US-based, parent-initiated research foundation supports scientific research aimed at finding treatments and a cure for fragile X syndrome. The website contains information on symptoms, cause, testing, treatment and research.

FRAXA also operates an email ListServ, through Emory University, that operates as a virtual support and information exchange group for all interested parties, including parents, other family members, educators, and medical professionals. To find out how to join the list, click here.

To find out what’s happening in other countries, visit these support group websites:

To access information on related disorders and their New Zealand support groups, visit the NZORD website.