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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
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.