Fragile X Society

Rood End House
6 Stortford Road
Great Dunmow
Essex
CM6 1DA

Tel: 01371 875 100
Web: www.fragilex.org.uk

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.
• Members are sent a copy of the Society's booklets and the latest issue of their newsletter.
• There is a national network of link members who offer local support to families.
• The newsletter is published three times a year and includes articles on education, therapies and welfare benefits, research reports and contributions from family and associate members.
• National family conferences offered biannually.
• 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.

Plus 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.