Useful Links​

 

At the Fragile X Society, we are pleased to support you and your family by offering a wide range of information and resources about Fragile X and associated conditions. We recognise there are a variety of websites with other resources you may find helpful so we have compiled a list of useful links you may like to explore.

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Embracing Complexity

Embracing Complexity brings together organisations working to improve the lives of people with neurodevelopmental conditions (NDCs). Over 60 organisations help work towards a world where everyone with neurodevelopmental conditions can achieve their potential.

 

https://embracingcomplexity.org.uk/

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Disabled Children’s Partnership

The Disabled Children’s Partnership is a major coalition of more than 90 organisations campaigning for improved health and social care for disabled children, young people and their families.

 

https://disabledchildrenspartnership.org.uk/

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Fragile X International

Celebrating and supporting those living with Fragile X Syndrome and Fragile X Premutation Associated Conditions around the world.

 

https://fraxi.org/

Genetic Alliance

The Genetic Alliance work on a variety of issues that families and individuals with genetic conditions face. They aim to provide information, support families and influence the services needed by these patients, working to add patient voice into debates that matter to our community.

 

https://geneticalliance.org.uk/

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Fundraising Regulator

The Genetic Alliance work on a variety of issues that families and individuals with genetic conditions face. They aim to provide information, support families and influence the services needed by these patients, working to add patient voice into debates that matter to our community.

 

https://geneticalliance.org.uk/

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My Family, Our Needs

My Family, Our Needs provides information and guidance to parents and carers of children with additional needs, providing support for your child and your health and wellbeing.

 

https://www.myfamilyourneeds.co.uk/

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Patrick Wild Centre

The mission of the Centre is to understand the neurological basis of, and to test new therapies for, autism, Fragile X Syndrome and intellectual disabilities by fostering collaborations between world-class basic science and clinical research at The University of Edinburgh.

 

https://patrickwildcentre.com/

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Cerebra

Cerebra is a unique charity set up to help improve the lives of children with brain related conditions (including Fragile X Syndrome) through research, education and directly supporting the children and their carers.

 

https://cerebra.org.uk/

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FIND

This website summarises findings from high quality research studies into genetic syndromes to share with parents, carers and professionals.

 

https://www.findresources.co.uk/

If you provide support that you think would be useful for our community, please get in touch and we would be happy to include your website and company details on our page.