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Smith-Magenis Syndrome Foundation UK logo

Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

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  • What is SMS?
    • Overview of SMS?
    • New Diagnosis
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    • Living with SMS
    • Sleep and SMS
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    • Frequently asked questions
    • Find Support for SMS
  • Spotlight on SMS health
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    • Emergency hospital documents for download
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Other Support Organisations

Further reading on Smith-Magnenis syndrome and living with disability can be found on some of these websites.

Other SMS Organisations

PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome)

PRISMS is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS.

Visit PRISMS website

SMS Research Foundation

The Smith-Magenis Research Foundation is dedicated to improving the lives of children born every day with SMS. We fund only the best, most comprehensive SMS research projects along with the best and brightest scientists focused in this area.

Visit SMS Research Foundation

Association Smith-Magenis (France)

The aim of the Association SMITH MAGENIS 17 France is to make the syndrome known both to health and education professionals and to the general public.

Visit Association Smith-Magenis

Research & Genetic Websites

FIND (Further Inform Neurogenetic Disorders

We are the Centre for Neurodevelopmental Disorders and are located in the School of Psychology at the University of Birmingham and are funded by Cerebra with additional support from a number of agencies and charities.

Visit FIND website

Genetic Disorders

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders.

Visit GDUK website

Jeans for Genes

We help disorder-specific charities and patient groups to deliver inspiring projects and support services for children affected by a genetic disorder in the UK.

Visit Jeans for Genes website

Cerebra

A charity dedicated to helping families with children with brain conditions discover a better life together.

Visit Cerebra website

The National Library of Medicine, Genetics Home

The National Library of Medicine (NLM), on the campus of the National Institutes of Health in Bethesda, Maryland, has been a center of information innovation since its founding in 1836. The world’s largest biomedical library, NLM maintains and makes available a vast print collection and produces electronic information resources on a wide range of topics that are searched billions of times each year by millions of people around the globe. It also supports and conducts research, development, and training in biomedical informatics and health information technology.

Visit NLM website

Behaviour and Learning

BILD (British Institute of Learning Difficulties)

Our vision is a society where people with disabilities are equal citizens, able to enjoy the same rights and opportunities as everyone else. Our mission is to enable excellent support, champion the rights, and improve the quality of life of people with disabilities.

Visit BILD website

The Challenging Behaviour Foundation

We are the charity for people with severe learning disabilities whose behaviour challenges. Our vision is for anyone with severe learning disabilities who displays challenging behaviour to have the same life opportunities as everyone else. We work to improve understanding of challenging behaviour, empower families with information and support, and help others to provide better services and more opportunities.

Visit Challenging Behaviour Foundation

Mencap

Our vision is a world where people with a learning disability are valued equally, listened to and included.

Visit Mencap

Family & Carers Support

Carers UK

The UK’s only national membership charity for carers, Carers UK is both a supportive community and a movement for change.

Visit Carers UK

Carers Trust

We work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.

Visit Carers Trust

Contact a Family

We provide information, advice and support. We bring families together so they can support each other. We campaign to improve their circumstances, and for their right to be included and equal in society.

Visit Contact a Family

Sibs

Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

Visit SIBs

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Please note: This is an answerphone service that will alert us as soon as a message is left. A trustee will call you back as soon as possible – we aim to respond to messages within 24 hours.

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The Smith-Magenis Syndrome (SMS) Foundation UK CIO

Connecting Families, Raising Awareness, Building Futures

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Proud finalist of Keele University Breaking the Mould awards
SCA Terrific trustee award 2020
NUE Best Student contribution

Registered UK Charity (CIO) 1186647   ·  Scottish Charity (SCIO) SC050921    

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