Family Support
We are the UK registered charity providing support and information to families whose children and relatives have fragile X syndrome.
We want families who have been diagnosed to have the opportunity of support from those who know the problems, and to have access to the fulll range of information about the syndrome, including the latest medical, psychological and educational research findings.
With a fuller understanding of the condition parents can be far more constructive and effective in helping their children to reach their full potential.
What would you like to do?
Information about fragile X
We have introductory booklets which describe the effects and causes of Fragile X Syndrome.
These booklets may either be downloaded from the Information page of this website; or, alternatively, you may wish to request them from us by downloading our Publication List/Order Form (which will open a pdf file in a new window) from where you can request them. All enquiriers may obtain a free copy each of these booklets, and there may be a charge fpr further copies, according to the reason for the need for extra copies. Alternatively site visitors may wish to download these booklets from the 'What is fragile X?' page of this site.
We also have many other papers giving more detailed information about different aspects of fragile X, such as behaviour, Fraxe, education, communication, sensory processing problems, girls & women with fragile X, adolescents and adults, genetics, carriers of fragile X, and health related issues.
A small sample of these publications and papers can be viewed and printed from the 'What is fragile X?' page on this website, from where it is also possible to access the full list and print it to order further papers that are of interest to you. A small charge is made for some of these papers to cover our photocopying and postage costs.
Wendy and Jane, our Family Support Workers, will be happy to give advice on the papers which are most appropriate for your needs.
ALL our publications have been written by or in consultation with the Society's specialist medical, scientific and educational advisors, fragile X researchers and clinicians.
Also available to order via our Publications List/Order Form:
- Award winning DVD: 'The Fragile X Syndrome' (running time 20 mins) @ £7.50 (inc p&p)
- BOOK: 'Educating Children with Fragile X Syndrome' @ £23.60 (inc p&p)
Personalised support and information service
Our Family Support Workers Wendy (who helps with children matters), and Jane (who provides support for adults), have lots of experience of helping our families, They will be pleased to help you with information and support that is specifically tailored to suit your particular individual needs.
Contact other family members
Families, especially newly diagnosed families, often ask us whether it is possible for us to put them in touch with other families, preferably in their own area, who they can contact and with whom they can share experiences and local knowledge.
Contact with other fragile X families is possible in the following ways:
- Ask Wendy and/or Jane, our Family Support Workers, to put you in touch with members of our National Family Link Support Network, who all have personal experience of fragile X. This service is only available to Family members of The Fragile X Society
- Join our on-line Forum (which is open only to Family Members)
- Come to our Family Conferences
Fragile X events
The full list of events are listed in our 'Events' page, and include information about
- the support group meeting to be held in Chelmsford, Essex on Wednesday 25th March 2009 for the parents and carers of children or adults with fragile X
- forthcoming conferences, where you have the opportunity to meet other family members, and receive news about fragile X from various professionals and other members
- fundraising events organised by our friends and family and professional members
Family stories
Our family members tell us that our Newsletter is a lifeline and immediately it arrives in the post they sit down to read the articles written by families.
Here are seven of those articles – click on the PDF symbols to read the stories which will appear in a new window:
Ewan & Harry’s Story - specially written for Jeans for Genes in 2006 when Ewan and Harry were 6 and 4 years old by their mother Liz
Download 'Ewan & Harry's Story' PDF file
Starting School - by Liz who tells us about planning and preparing her son, Ewan, for primary 1 in a mainstream school
Download 'Starting School' PDF file
Arianne’s Story - the experience of a mildly affected carrier, looking back at her time at school and college and looking to the future
Download 'Arianne's Story' PDF file
My Week by Andrew - who tells us about his week at college in 2004 and his mother fills in the gaps!
Download 'My Week by Andrew' PDF file
Gardening - by Ian, and Ian’s sister adds…….
Download 'Gardening' PDF file
Fragile X, not fragile legs - a young doctor's experience of fragile X by Lucy whose brother has fragile X
Download 'Fragile X, not fragile legs' PDF file
Rose's Story - about her son, Marshall, who is 5 years old
See Also
Support and Information for Carriers of fragile X
Help and Support for Newly Diagnosed Families
Help and Support for Carriers
Family Support
We are the UK registered charity providing support and information to families whose children and relatives have fragile X syndrome.
We want families who have been diagnosed to have the opportunity of support from those who know the problems, and to have access to the fulll range of information about the syndrome, including the latest medical, psychological and educational research findings.
With a fuller understanding of the condition parents can be far more constructive and effective in helping their children to reach their full potential.
What would you like to do?
Information about fragile X
We have introductory booklets which describe the effects and causes of Fragile X Syndrome.
These booklets may either be downloaded from the Information page of this website; or, alternatively, you may wish to request them from us by downloading our Publication List/Order Form (which will open a pdf file in a new window) from where you can request them. All enquiriers may obtain a free copy each of these booklets, and there may be a charge fpr further copies, according to the reason for the need for extra copies. Alternatively site visitors may wish to download these booklets from the 'What is fragile X?' page of this site.
We also have many other papers giving more detailed information about different aspects of fragile X, such as behaviour, Fraxe, education, communication, sensory processing problems, girls & women with fragile X, adolescents and adults, genetics, carriers of fragile X, and health related issues.
A small sample of these publications and papers can be viewed and printed from the 'What is fragile X?' page on this website, from where it is also possible to access the full list and print it to order further papers that are of interest to you. A small charge is made for some of these papers to cover our photocopying and postage costs.
Wendy and Jane, our Family Support Workers, will be happy to give advice on the papers which are most appropriate for your needs.
ALL our publications have been written by or in consultation with the Society's specialist medical, scientific and educational advisors, fragile X researchers and clinicians.
Also available to order via our Publications List/Order Form:
- Award winning DVD: 'The Fragile X Syndrome' (running time 20 mins) @ £7.50 (inc p&p)
- BOOK: 'Educating Children with Fragile X Syndrome' @ £23.60 (inc p&p)
Personalised support and information service
Our Family Support Workers Wendy (who helps with children matters), and Jane (who provides support for adults), have lots of experience of helping our families, They will be pleased to help you with information and support that is specifically tailored to suit your particular individual needs.
Contact other family members
Families, especially newly diagnosed families, often ask us whether it is possible for us to put them in touch with other families, preferably in their own area, who they can contact and with whom they can share experiences and local knowledge.
Contact with other fragile X families is possible in the following ways:
- Ask Wendy and/or Jane, our Family Support Workers, to put you in touch with members of our National Family Link Support Network, who all have personal experience of fragile X. This service is only available to Family members of The Fragile X Society
- Join our on-line Forum (which is open only to Family Members)
- Come to our Family Conferences
Fragile X events
The full list of events are listed in our 'Events' page, and include information about
- the support group meeting to be held in Chelmsford, Essex on Wednesday 25th March 2009 for the parents and carers of children or adults with fragile X
- forthcoming conferences, where you have the opportunity to meet other family members, and receive news about fragile X from various professionals and other members
- fundraising events organised by our friends and family and professional members
Family stories
Our family members tell us that our Newsletter is a lifeline and immediately it arrives in the post they sit down to read the articles written by families.
Here are seven of those articles – click on the PDF symbols to read the stories which will appear in a new window:
Ewan & Harry’s Story - specially written for Jeans for Genes in 2006 when Ewan and Harry were 6 and 4 years old by their mother Liz
Download 'Ewan & Harry's Story' PDF file
Starting School - by Liz who tells us about planning and preparing her son, Ewan, for primary 1 in a mainstream school
Download 'Starting School' PDF file
Arianne’s Story - the experience of a mildly affected carrier, looking back at her time at school and college and looking to the future
Download 'Arianne's Story' PDF file
My Week by Andrew - who tells us about his week at college in 2004 and his mother fills in the gaps!
Download 'My Week by Andrew' PDF file
Gardening - by Ian, and Ian’s sister adds…….
Download 'Gardening' PDF file
Fragile X, not fragile legs - a young doctor's experience of fragile X by Lucy whose brother has fragile X
Download 'Fragile X, not fragile legs' PDF file
Rose's Story - about her son, Marshall, who is 5 years old
See Also
Support and Information for Carriers of fragile X
Help and Support for Newly Diagnosed Families
Help and Support for Carriers