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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?
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    • Sleep and SMS
    • Health
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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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Connecting Families, Raising Awareness, Building Futures

Help us support a fulfilling future for everyone living with Smith-Magenis syndrome

We want to bring more families together, provide education and awareness training, and sponsor research into SMS. But we can’t do it without your help.

Please Donate Today
Fulfilling Futures Campaign

We are the Smith-Magenis Syndrome (SMS) Foundation UK, and we support families who have children and adults with SMS.

Our Vision

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

Our Mission and Values

Our Services and how we help


  • Provide emotional and practical support – virtually or in-person
  • Organise, promote, and help towards funding of SMS community get-togethers
  • Connect families locally through our Regional Parent Supporters (RePS) Programme
  • Conferences
  • Small grant scheme to benefit and improve the quality of life of a person with SMS
  • Provide information through printed and digital literature, and our website hub
  • Direct any complex questions you have to the professionals
  • Promote, fund, and collaborate in SMS research projects
  • Provide information for interested parties about SMS, and raise awareness
About Us
How we help

Never feel isolated or alone. Call our helpline: 0300 101 0034, or 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.

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


Launch of ‘Beond’ a new project with our partners at the Cerebra Network

November 17, 2022

We’re delighted to announce the launch of ‘Beond’ a new pioneering study with our partners at the Cerebra Network. The Beond project aims to understand the behaviours of children and …

Read moreLaunch of ‘Beond’ a new project with our partners at the Cerebra Network

We’ve been shortlisted for an Award!

September 27, 2022

We are delighted to announce that we have been shortlisted for the Keele University ‘Breaking the Mould’ award in the cultivating talent category! As a Board of Trustees, for the past 10 …

Read moreWe’ve been shortlisted for an Award!

Transitions Community Chat (online)

September 12, 2022

Wednesday 14th September at 11 am and 7 pm Do you have a child starting primary school, or perhaps an adult about to leave school? Transitions are a scary place for parents and carers of people with …

Read moreTransitions Community Chat (online)

Get Involved


SMS Family Meet-up in Lancashire

View detailsSMS Family Meet-up in Lancashire

London Landmarks Half Marathon 2023

LLHM 2023
View detailsLondon Landmarks Half Marathon 2023

Caden’s Story

Nine-year-old Caden, based in Clackmannanshire, was facing potential months of limited exercise at the start of the UK lockdown in March.

We speak to his mother, Stacy, on how the wellbeing of the entire family improved thanks to the donation of a tricycle via the Smith-Magenis Syndrome Foundation.

Read Caden’s StoryCaden’s Story

Ways to support the SMS Foundation


Whether you are running a marathon, organising a fundraising event, or want to become a regular giver we have a selection of ideas and resources to help get you going.

Get Involved

Forms and fundraising campaigns.

ViewGet Involved

SMS 1711 Circle

Become a Regular Donor

ViewSMS 1711 Circle

Fundraising Ideas

A – Z of Fundraising Ideas

ViewFundraising Ideas

All Events

All fundraising and community events for our SMS families to take part in.

ViewAll Events

Featured products from our shop

Medium SMS Bear (2021)

SMS Running Vest

SMS Sports Bottle

SMS Teddy Bears Picnic Mug (2021)

View Shop

Spotlight on SMS


A series of articles exploring common health symptoms and general wellbeing within Smith-Magenis syndrome.

Introduction to vision in SMS

September 2, 2021

Through the Keele University Internship Programme, Liam joined the SMS Foundation for the summer to …

girl with CVI struggles to get down stairs

Cortical Visual Impairment

July 8, 2021

What is Cortical Visual Impairment (CVI)? Cortical visual impairment (CVI) is a brain-based visual …

Spotlight on Sleep

July 8, 2021

Spotlight on Sleep A family’s life can easily turn into a nightmare when one member has a …

View all Spotlight Articles
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Funders and Partners

Flynn Pharma logo
Foundation Scotland logo
Pears Foundation logo

Join our Community

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!

Join
View the international map of families diagnosed with SMS

Never feel isolated or alone.
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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