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Fragile X syndrome is the most common identifiable cause of inherited learning disability and it shows itself in a wide range of difficulties with learning and behaviour problems.
The Fragile X Society was formed in May 1990 by parents whose children have Fragile X syndrome. The Society's main aims are to provide support and information to Fragile X families, to raise public awareness of Fragile X, and to encourage research.
- Family membership is free to anyone who has a relative with Fragile X syndrome.
- The newsletter includes articles on education, therapies and welfare benefits, research reports and contributions from family and associate members.
- National family conferences offered.
- The Society provides information to professionals working with or caring for affected individuals.
- The Society has helplines on epilepsy, education, and benefits advice.
- The Society has family support workers working with families.
The Society has a range of publications available, some of which are free to members. There are over 100 papers and articles on all aspects of Fragile X. Titles of the four booklets are:
- What is Fragile X?
- Fragile X Syndrome: An Introduction.
- Fragile X Syndrome: An Introduction to Education Needs.
- Fragile X Syndrome: Education and Severe Learning Difficulties.
There are also other articles from conference presentations and back issues of newsletters. The Society has also produced a DVD on Fragile X syndrome to illustrate the wide-ranging effects of Fragile X and to show the characteristic behaviours that provide clues for diagnosis of this condition.
Last updated on 31/10/2013