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.
Online Child Safety
Please see read this comprehensive and user-friendly resource on ways to enhance your child’s online safety. It covers a wide spectrum of topics, including age-appropriate online activities, potential risks, fostering open communication with children, and implementing practical safety measures
NSPCC - Safeguarding
If you require support and safeguarding for a child, please visit the NSPCC website for advice. They are the UK's leading children’s charity and have been looking out for children for over 130 years. Their website has advice and support lines you can contact for confidential advice.
Adult Safeguarding
For adult safeguarding please refer to your local authority, who will be able to advise and support you with any concerns you may have.
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.
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.
Fragile X International
Celebrating and supporting those living with Fragile X Syndrome and Fragile X Premutation Associated Conditions around the world.
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.
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.
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.
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.
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.
FIND
This website summarises findings from high quality research studies into genetic syndromes to share with parents, carers and professionals.
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.