Select a Syndrome or Condition
Activ Foundation. A better life... Parent Portal
legend

Syndromes & Conditions - Fragile X

WEBSITES


Building social supports : a guide for parents -- Walnut Creek, Ca: National Fragile X Foundation 2011.

Reprinted from the NFXF Quarterly June 2007, this article looks at how individuals with FXS often have difficulty establishing meaningful relationships and provides ideas to help such individuals and familiies.



Conquer Fragile X website [2012]

While this site is focused on fundraising for a virtual research centre in Israel the information describing the genetic basis of the condition is clear and has good illustrations.



Fragile X

A brief description of the syndrome and details of the UK support group.



Fragile X Alliance -- North Caulfield, Vic: Fragile X Alliance [2012]

The Fragile X Alliance Inc is a non-profit organisation whose mission statement is to promote education and research into Fragile X syndrome, as well as disseminate information and new findings about Fragile X syndrome [website]. The website features links to current research projects, resources including downloadable documents, and links to related organisations.



Fragile X Association of Australia -- Manly, NSW: Fragile X Association of Australia [2012]

Website of the Fragile X Association of Australia, a non-profit organisation made up of family, friends, therapists, doctors and carers of people with Fragile X Syndrome. They are a national organisation based in Sydney with individual support groups around Australia. The website provides access to: information, news and resources relating to Fragile X Syndrome within Australia and internationally; an online community offering support, help and contact for those dealing with the challenges of Fragile X; news from State Support Groups with up-to-date listing of events, meetings, social gatherings and state specific news and resources.



Fragile X support group of WA Inc. -- Perth: [2008]

The Fragile X Support Group exists to help parents, carers or relatives that have had family members or friends diagnosed with Fragile X Syndrome. This website features information on Fragile X syndrome, information on activities and services in the local WA community, links to useful websites, a photo gallery and information on local upcoming events. Member meetings and a parent link service are also hosted by this group.



Fragile X syndrome [2013]

This paper has an extensive coverage of fragile X including what it is, what causes it and how it is inherited, signs and symptoms of fragile X, treatments, adults with fragile X, and where to get more information about the syndrome.



Fragile X syndrome -- St Leonards, NSW: Centre for Genetics Education 2007. 5 p.

A fact sheet discussing the genetic conditions which may lead to the development of Fragile X syndrome.



Fraxa : the Fragile X Research Foundation website [2014]

The Foundation supports research aimed at treatment for fragile X. The website contains information about symptoms and causes of fragile X. It also has a mailing list whereby families can ask questions and participate in discussions about fragile X.



National Fragile X Foundation -- Walnut Creek, Ca: National Fragile X Foundation 2012.

This is the new website of the National Fragile X Foundation of the USA. It provides information on the disorders, treatment and intervention, research and resources. It has information on new diagnosis and life planning.



Understanding Fragile X -- [Manly, NSW]: Fragile X Association of Australia 2012. 1 Video (29 min)

This is a on-line DVD resource to help those affected, especially newly diagnosed families with young children, to understand the syndrome, its implications, what they can possibly expect in the future, and what help is available to them. It also informs and educates medical and education professionals on how best to facilitate the treatment of FXS and where to go for more information.