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Smith-Magenis Syndrome Foundation UK logo

Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

  • What is SMS?
    • Overview of SMS
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    • A Guide to SMS Booklet
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  • What is SMS?
    • Overview of SMS?
    • New Diagnosis
    • SMS Behaviours
    • Living with SMS
    • Sleep and SMS
    • Health
    • Facts about Smith-Magenis syndrome
    • Frequently asked questions
    • Find Support for SMS
  • Spotlight on SMS health
    • Vision
    • Sleep
  • Find Support for SMS
    • Small Grant Applications
    • Newlife’s Emergency Equipment Loan Service
    • Emergency hospital documents for download
    • Other Support Organisations
    • Scientific Papers
    • SMS Research
    • Videos
  • Our SMS Community
    • Become a Member
    • Regional Parent Supporters
    • Stories from our SMS Community
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A Guide to SMS Booklet

Information Booklet

Smith-Magenis Syndrome is a complex disability. Each individual will exhibit different aspects of the characteristics and so each family with develop their own ‘coping’ strategies. It is important to get professionals involved early on to provide the family with the support needed.
Input from paediatricians, Speech and Language therapists, Physiotherapists, educational professionals, Portage, social services, Child and Adult mental health services etc are all very important and a multi- agency approach is vital!

Smith-Magenis Syndrome: Guidelines for Parents and Teachers

SMS Guidelines booklet

Our booklet provides a lot of practical helpful advice about coping with all aspects of SMS. It covers sleep, social relationships, behaviours, feeding difficulties, toilet training, dressing, school concerns, behaviour in adulthood, siblings and sources of further help.

This booklet is available free from the foundation and each member will automatically receive one on joining the foundation. You can also download a free copy (pdf) or purchase a Kindle version at £1.49 through Amazon.

Download Booklet (PDF)
Purchase Kindle Book

Translations

This booklet has now also been translated into German, Portuguese, and Italian and can be downloaded using the links below. Many thanks to Dr. Alexander Ströher (German), Fernanda Perla (Portuguese), and Xheni Prebibaj (Italian) for the booklet translations.

Download German translation
Download Portuguese
Download Italian

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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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