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Newly Diagnosed Families
It can be an emotional time, and for some, a lonely time when families first learn of a fragile X diagnosis. We want you to know that you are not alone, and we hope that we can help you deal with this. The time of the first diagnosis can be a very tough time, and we understand this.
The Fragile X Society can provide support and information for families at this time. By joining the Society you will be able to contact families who have children and young adults with fragile X syndrome through our Link Family network. It is understandable for some newly diagnosed parents to want to speak to another parent who can understand their needs and concerns.
How having a diagnosis can help
- Families and carers can begin to understand how fragile X impacts on their child and why they experience particular difficulties.
- By contacting the Society families can begin to find support and information.
- By becoming members of the Society families will receive our Newsletter and information about all our Family Conferences as well as being able to contact our Link Members.
- It may be possible to secure financial benefits, get educational support for your child and access to specialist health services and social services.
- Implications of the diagnosis on the wider family can begin to be considered and discussed.
- And let’s not forget all the great things about your child. Parents of children with fragile X often describe their great sense of humour, their amazing memory and their sensitivity to the feelings of others.
How can we can help
We are the UK registered charity providing support, and information to families whose children and relatives have fragile X syndrome.
What would you like to do?
-
-
contact Wendy and Jane, our Family Support Workers, to seek personalised support and information. Wendy helps with children matters, and Jane helps with matters relating to adults - both are very helpful and approachable, and know well the issues that may concern you. They can put you in touch with our Link Family Members, all of whom have personal experience of fragile X and who know well the thoughts and questions that may be going through your mind
-
apply to become a family member so that you can benefits from all the benefits which members are entitled to
Or you may wish to
- join the family members' only on-line forum and make contact with other family members
- find fragile X events which are taking place, which may give you the opportunity to meet other fragile X families, or participate in other activities such as fundraising
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 order them. There is no charge for this service, it is FREE to all enquirers.
We also have many other papers giving more detailed information on the many 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.
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, (see above) will be happy to give advice on the papers which are most appropriate for your needs.
Please rest assured tha 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)
Alternatively please Contact Us to obtain copies of the DVD and/or book.
Personalised support, information, and advice service
Our Family Support Workers Wendy who helps with matters relating to children, and Jane who helps with adult issues, have lots of experience of helping our families. They will be pleased to help you with information and advice that is tailored to your particular needs.
Contact other family members
Families, specially newly diagnosed families, often ask us whether it is possible for us to put them in touch with other families, preferably in their area, who thay can be-friend, and with whom they can share experiences.
Contact with other fragile X families is possible in the following ways:
- Ask Wendy and/or Jane, our Family Support Workers, for access to our National Family Link Support Network of families, all of whom have personal experience of fragile X
- Join our Members Only Families on-line Forum (which is only open to Family Members of the Society)
- Come to our Family Conferences
Fragile X events
The full list of events are listed in our 'Events' page, and include information about
See also:
Family Support
Current UK Fragile X Studies
UK Research Reports
Newly Diagnosed Families
It can be an emotional time, and for some, a lonely time when families first learn of a fragile X diagnosis. We want you to know that you are not alone, and we hope that we can help you deal with this. The time of the first diagnosis can be a very tough time, and we understand this.
The Fragile X Society can provide support and information for families at this time. By joining the Society you will be able to contact families who have children and young adults with fragile X syndrome through our Link Family network. It is understandable for some newly diagnosed parents to want to speak to another parent who can understand their needs and concerns.
How having a diagnosis can help
- Families and carers can begin to understand how fragile X impacts on their child and why they experience particular difficulties.
- By contacting the Society families can begin to find support and information.
- By becoming members of the Society families will receive our Newsletter and information about all our Family Conferences as well as being able to contact our Link Members.
- It may be possible to secure financial benefits, get educational support for your child and access to specialist health services and social services.
- Implications of the diagnosis on the wider family can begin to be considered and discussed.
- And let’s not forget all the great things about your child. Parents of children with fragile X often describe their great sense of humour, their amazing memory and their sensitivity to the feelings of others.
How can we can help
We are the UK registered charity providing support, and information to families whose children and relatives have fragile X syndrome.
What would you like to do?
-
-
contact Wendy and Jane, our Family Support Workers, to seek personalised support and information. Wendy helps with children matters, and Jane helps with matters relating to adults - both are very helpful and approachable, and know well the issues that may concern you. They can put you in touch with our Link Family Members, all of whom have personal experience of fragile X and who know well the thoughts and questions that may be going through your mind
-
apply to become a family member so that you can benefits from all the benefits which members are entitled to
Or you may wish to
- join the family members' only on-line forum and make contact with other family members
- find fragile X events which are taking place, which may give you the opportunity to meet other fragile X families, or participate in other activities such as fundraising
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 order them. There is no charge for this service, it is FREE to all enquirers.
We also have many other papers giving more detailed information on the many 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.
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, (see above) will be happy to give advice on the papers which are most appropriate for your needs.
Please rest assured tha 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)
Alternatively please Contact Us to obtain copies of the DVD and/or book.
Personalised support, information, and advice service
Our Family Support Workers Wendy who helps with matters relating to children, and Jane who helps with adult issues, have lots of experience of helping our families. They will be pleased to help you with information and advice that is tailored to your particular needs.
Contact other family members
Families, specially newly diagnosed families, often ask us whether it is possible for us to put them in touch with other families, preferably in their area, who thay can be-friend, and with whom they can share experiences.
Contact with other fragile X families is possible in the following ways:
- Ask Wendy and/or Jane, our Family Support Workers, for access to our National Family Link Support Network of families, all of whom have personal experience of fragile X
- Join our Members Only Families on-line Forum (which is only open to Family Members of the Society)
- Come to our Family Conferences
Fragile X events
The full list of events are listed in our 'Events' page, and include information about
See also:
Family Support
Current UK Fragile X Studies
UK Research Reports
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