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Smith-Magenis Syndrome Foundation UK logo

Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

  • What is SMS?
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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
  • Contact

How We Help

At the foundation our primary focus is to support families – we do this in a variety of different ways:

  • Provide information – we have a variety of literature available on the website or in booklet form
  • Direct any questions you have to relevant professionals. We are not medical professionals, so any questions related to sleep, medication, behaviour, etc we will forward on to our board of professionals who do know
  • Provide emotional support on the phone or in-person
  • Provide information for interested parties ( e.g housing/education etc) about Smith-Magenis Syndrome
  • Organise biennial conferences which allow our Smith-Magenis syndrome community to share information, experiences, ideas, and knowledge
  • We promote awareness of SMS through our partnerships with other charities and organisations including Cerebra, Genetic Disorders, and Jeans for Genes
  • Fundraising events – As this not only raises much-needed funds for the foundation it also creates an awareness of Smith-Magenis Syndrome
  • Media campaigns – We have been involved in organising or directly taking part in TV interviews, radio interviews, as well as newspaper and magazine articles to discuss Smith-Magenis Syndrome
  • Developing merchandise – including key rings, wristbands, t-shirts, bags, baseball caps coasters, and car stickers
  • Sponsorship of research into the key symptoms of Smith-Magenis syndrome
  • We provide small grants (up to £500) to improve the quality of life of the person with SMS, and financial support (up to £200) for social events (get-togethers) for members to connect with other SMS families and share experiences.
Group of people discussing issues at 2017 SMS conference

Please do not hesitate to get in touch with us if you have any questions or suggestions.

Get in Touch

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Join as a family member and we can connect you with families living near you. You will also receive updates of any social meetings, conferences, and fundraising events going on! Joining is quick and easy!

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View the international map of families diagnosed with SMS

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Call our helpline: 0300 101 0034
Other ways to Contact Us

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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