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Smith-Magenis Syndrome Foundation UK logo

Connecting Families | Raising Awareness | Building Futures

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Smith-Magenis Syndrome Foundation UK

Connecting Families | Raising Awareness | Building Futures

Registered UK Charity 1072573 (CIO 1186647) | Registered Scottish Charity SC044841

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  • What is SMS?
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    • Teddy Bears’ Picnic 2021
      • Design an Easter Card – Online Activity
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Teddy Bears' Picnic campaign image

Our Next SMS Foundation Community Event
Connect with families in your region, and across the UK in our virtual Teddy Bears’ Picnic Event.
Saturday and Sunday 1st & 2nd May 2021. #SMSBearHugandBeHugged Find out more…

Step Into Spring with SMS!

Join us in our SMS Step Into Spring campaign this April and May, raising funds for the SMS Foundation UK to allow us to continue supporting families diagnosed with Smith-Magenis syndrome in the UK.

Find a Challenge

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So Many Steps for SMS

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Scotland Virtual Kiltwalk

Running

5KMay Challenge

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We Support Families who have Children and Adults with Smith-Magenis Syndrome

Our Vision:

Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community.

Our mission and values

What is Smith-Magenis Syndrome?

Smith-Magenis syndrome (SMS) is a genetic disability due to a microdeletion or abnormality of chromosome 17. The key symptoms of SMS include:

  • mild to moderate learning disability
  • severely disrupted sleep pattern
  • delayed speech and language skills
  • distinctive facial features
  • behaviours that challenge like self-harm, aggression, impulsivity and hyperactivity
Learn more about Smith-Magenis syndrome

What’s New?

Impact of COVID-19 on SMS Population Survey

This week’s community Zoom drop-in chat with Jayne Dainty of SOS Care Services

SMS conference

SMS Foundation UK Conference Cancelled for 2021

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How we help

Provide information – we have a variety of literature available on the website or in booklet form
– Direct any questions you have to the professionals
– Provide emotional support – on the phone or in-person
– Provide information for interested parties about SMS
– Organise and promote social get-togethers
– Small grants can be provided
– Fund research projects

Our mission and values

Connecting Families


  • Join our Facebook Community
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  • Talk to us

Raising Awareness


  • SMS Conferences and Events
  • Get Involved
  • Share My Smile

Building Futures


  • Small Grant Applications
  • Become a Member
  • How We Help

Featured Products

Mini Jointed SMS Bear

£8.00
Shop now

Reusable Face Mask

£7.50
Shop now

SMS Sports Bottle

£5.00
Shop now
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Understanding Smith-Magenis Syndrome

Diagnosis of SMS baby

That Defining Moment

Broadly focusing on the diagnosis and early planning aspects of Smith-Magenis syndrome.

Young female with SMS

Sunlight and Nightshade

The SMS Personality, managing behaviours and developing skills.

SMS Child asleep whilst up at counter

Sweet Dreams and Survival

Understanding the sleep patterns of SMS and learning to manage and cope.

Young SMS man with wood working

Bright Stars Shining a Light

Living with SMS, finding support and building futures.

Funders and Partners

Jeans for Genes Day
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Join our community and become a family member

If you join as a family member you will receive updates of any social meetings, conferences and fundraising events that are going on! Joining is quick, easy and free!

Family Membership
Professional Membership

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Contact Us

Call: 0300 101 0034

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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