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 About Fragile X

Fragile X Syndrome is the most common known cause of inherited learning disabilities. It can cause a wide range of difficulties with learning, as well as social, language, attentional, emotional, and behavioral problems.

Our  leaflet and booklets (see links below) give basic and then progressively more detailed information about fragile X. All have been written by or in consultation with the Society's medical, scientific and educational advisors, fragile X researchers and clinicians.

We also offer An Easy Read Guide to Fragile X Syndrome for Parents. More details about this guide can be found here.

In addition fragile X information in Arabic, Farsi, Gujarati, Punjabi, Turkish, and Urdu can also be found here.

Request / Order our papers and any of our leaflet or booklets by using our Publications List

Copies of all our booklets, as well as a full range of papers covering all aspects of fragile X can be obtained either by using our Publications List  link above, (please note a new window will open to display the contents of this pdf file), or by using the Contact Us facility of this web site. 

Individually tailored support, information and advice

We believe that the above publications give a very good introduction to fragile X; however, as fragile X is a complex condition and can be very wide-ranging in its effects, our Family Support Workers Jane and Wendy will be very pleased to give individual, tailored support, advice, and information that is specific to the particular requirements of both families and professionals. Please contact us either by phone on 01371 875100, or email us at info@fragilex.org.uk

Fragile X Information in other languages

For those seeking information about fragile X in other languages, the following 'Fragile X Genetics Patients Information' sheets prepared by London IDEAS Genetic Knowledge Park are available as pdf files. (New Window will open).

in Arabic

in English     

in Farsi     

in Gujarati 

in Punjabi     

in Turkish     

in Urdu

Somali and Sylheti verstions available in audio format from www.londonideas.org./internet/index.html

More detailed information about fragile X

In addition to all of the above, we have a very wide range of papers that cover every aspect of fragile X. These are organised in our Publications List into various sections to ease searches for specific information. A subset of these papers are available for viewing below; or alternatively, the entire list can be viewed by downloading our  Publications List  (and Order Form). (This will open a new window into which the pdf file will be loaded)

This list should be used to order one or more publications or papers - single copies of the Society's leaflet and booklets are available free. There is a small charge for the papers to cover our photocopying and postage costs.

The Society also has a booklet entitled “A Guide for families wishing to make legal (financial) provision for a disabled relative” by Anthony Quinn, Solicitor, former Chair of the Law Society Committee on Learning Disabilities and former Trustee of our Society. This Guide is available to our family members, to obtain a copy please Contact Us.

If you have any questions arising from the information about fragile X you read on our website please call us on 01371 875100 or email me, Sumati Saxton, at info@fragilex.org.uk or go to Contact Us.

What is fragile X?   

A brief description of fragile X syndrome: how it is caused, its effects, diagnostic tests, and the support and information available from the Fragile X Society.

Download 'What is fragile X?' pdf file (new window will open)

Fragile X Syndrome - An Introduction     

Download Fragile X Syndrome - An Introduction


  • the genetics of fragile X and the importance of genetic counselling for families
  • the learning, behaviour and relationship difficulties associated with fragile X and how these difficulties may be helped
  •  the different problems girls and women may experience and the physical features associated with the syndrome

Download 'Fragile X Syndrome - An Introduction' pdf file (new window will open)

Compiled from information provided by the Fragile X Society's specialist advisors, the Society gratefully acknowledges the help and advice it received from Dr Angela Barnicoat, Consultant Geneticist, Institute of Child Health, London and Dr Jeremy Turk, Senior Lecturer in Child & Adolescent Psychiatry, St George's Hospital Medical School, University of London

Fragile X Syndrome – An Introductory Guide To Educational Needs

 (and how they can be met).                                              

Download Fragile X Syndorme: An Introduction to Educational Needs

Explains the effects of fragile X on learning, with sections on:

  • speech, language and communication 
  • sensory issues 
  • eye contact
  • effects of fragile X on learning and charateristics affecting classroom management:
  •       school placement
  •       the classroom environment and teaching techniques
  •       starting school / changing schools
  •       reading
  •       writing
  •       maths / numeracy
  • behaviour and behaviour management
  • social issues
  • female issues

Download 'Fragile X Syndrome: An Introductory Guide to Educational Needs' pdf file (new window will open)

The Fragile X Society gratefully acknowledges the help and advice it received from its specialist advisor: Charles Gibb and Professor Jeremy Turk for their support and comments, and the many other professionals and family members whose work has also been used in the formation of this fourth edition of this booklet.

An Easy Read Guide to Fragile X Syndrome For Parents

To download this book please click here. Alternatively, you may wish to Contact Us via an email to request a copy of this guide, or phone us on 01371 875100 and ask for a copy to be posted to you.

 The Fragile X Society : Publications List

The following list is a very small subset of our publications papers, which should serve to illustrate the range of subject areas related to fragile X which are covered by the papers. Where a list item includes a pdf symbol, then that paper is available to download; otherwise the full list of all the papers available under each section can be seen in the Publications Order Form, which should also be used to order one or more copies of the papers from us.  

Whereas many of these papers are free to family members of the Society, a small charge is made for some of the papers to cover our reproduction costs. 


Behaviour challenges in children & adults with fragile X sydrome: What help is available? by Dr Angela Hassiotis


FraXe: underdiagnosed, undertreated, under-researched and misunderstood? by Laura Freeman & Dr Jeremy Turk

To obtain a copy of this paper please Contact Us


What I tell teachers about fragile X by Charles Gibb


Speech and language difficulties in fragile X syndrome by Catherine Taylor

Sensory processing problems

Helping your child to make sense of their world by Claire Wolstencroft

Girls and Women with fragile X

Educational and emotional difficulties experienced by girls with fragile X syndrome by Dr Lesley Powell

Adolescents and Adults

Fragile X Guide to Employers from Newsletter 34, Spring 2005


Importance of genetic counselling by Barbara Carmichael

Carriers of fragile X

Social Anxiety in Carrier Women by Dr Lesley Powell

Prenatal testing for fragile X by Barbara Carmichael


Health and social aspects of fragile X by Dr Jeremy Turk

Please note  there are  many many  more papers in each of the above sections. 

A full list of the papers under each section can be viewed and / or to printed as our Publications List , which can also be used to order single copies of the Society's leaflet and booklets (available free). There is a small charge for the papers to cover our photocopying and postage costs.

If you have any questions, queries, or comments arising from the information about fragile X you read on our website please call us on 01371 875100 or email me, Sumati Saxton, at info@fragilex.org.uk or go to Contact Us.


 See also

 UK Research Reports

Current UK Fragile X Studies




Easy Read Guide to
Fragile X Syndrome
For Parents:

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA
Great care has been taken in the compilation and preparation of this site to ensure that the information included is accurate. However The Fragile X Society cannot accept responsibility for any errors or omissions. The information is provided for education and information purposes and you should obtain further information from your medical practitioner. We do not knowingly reproduce inaccurate or libellous material. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites.

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