Fragile X Society

Fragile X Syndrome is the most common inherited cause of learning disability. In addition, Fragile X is a family of conditions and multiple members of families may be affected by it in different ways.

We provide information and practical guidance to support and empower people with Fragile X and the professionals who support them.

Our free resources include:

  • digital newsletter
  • information videos
  • information booklets and leaflets

We hold conferences and family events and we promote engagement in research and disseminate the results to ensure best practice when working with people with Fragile X.

Please contact us to find out more, or visit our website.

Who to contact

Telephone
01371 875 100
E-mail
info@fragilex.org.uk
Website
Fragile X Society
Notes

Charity number: 1127861

Other details

Cost description
Free
Referral and availability notes

Anyone caring for or working with an individual with Fragile X or suspecting Fragile X may be the cause of someone's difficulties can contact us. 

Local Offer

Local Offer description

Families caring for an individual with Fragile X or professionals working with individuals with Fragile X can contact us for guidance, support and information on best practice when working with individuals affected by Fragile X.

We also have an E-learning facility aimed at professionals working with individuals with fragile X. This costs £25 per site license, which enables its use on one computer for one year. 

Contact telephone
01371 875 100
Contact email
info@fragilex.org.uk

What does your service do?

What does your service do?

We offer support, information and advice to families affected by Fragile X Syndrome and to their professionals.

Where is it located and what areas does it cover?

Where is it located and what areas does it cover?

We are based in Essex but cover all the UK. Contact is by telephone or email. 

Who does your organisation provide a service for?

Who does your organisation provide a service for?

Families affected by Fragile X and professionals working in the field of Fragile X. 

How can I start using the service?

How can I start using the service?

Call us on Tel: 01371 875 100 or email info@fragilex.org.uk 

How are decisions made about who can use your service?

How are decisions made about who can use your service?

Anyone involved with an individual with Fragile X or suspecting Fragile X may be the cause of someone's difficulties can use the service. 

How do I know what is going on and can I be involved in making plans for the future?

How do you communicate with service users and how are they involved in decision making / planning?

We have a regular newsletter that goes out to members by email. Member's views are sought through our AGM and any family can always contact us. 

Is your service fully accessible?

Is your service fully accessible?

Accessible by phone and email. 

What training have your staff had regarding SEND?

What training are the staff supporting children and young people with SEND had or are having?

We have regular updates on research in Fragile X and attend courses we can access on SEND updates. 

Who can I contact for further information?

Who can I contact for further information?

Contact the team on 01371 875 100. 

Disclaimer

Durham County Council's Families Information Service does not promote nor endorse the services advertised on this website. Anyone seeking to use/access such services does so at their own risk and may make all appropriate enquiries about fitness for purpose and suitability to meet their needs.
Powered by Open Objects