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SMS Foundation UK

Supporting SMS families for a positive future

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We are a small charity that supports families living with Smith-Magenis syndrome (SMS)

Never feel isolated or alone. Call our helpline and leave a message: 0300 101 0034 (we aim to respond to messages within 48 hours).

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News & Events

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Here you’ll find the latest news from the Foundation, details of upcoming events, updates on research, activity highlights, and blogs that share insight and lived experience.


Colourful graphic banner promoting community survey to understand life with SMS

Help shape the future of support for people with SMS

Save the date image for Activity Weekend 2026

Save the Date, SMS Family Weekend in Liverpool 2026

Our older SMS group ready for their pedalo

A Day to Remember at Avon Tyrrell

Lockerbie Manor House, Scotland

Join Us for a Day of Connection and Adventure in Scotland! (Past Event)

Thank you image for Jeans for Genes

A Huge Thank You to Jeans for Genes

Cambridge university and SMS logo

Introducing SMS Springboard: A Research Project on the Health and Well-being of People with SMS

Rareminds logo

SMS Foundation & Rareminds Specialist Counselling Service

Ann Smith & Ellen Magenis

Disability History Month: SMS and Our Foundation

Irwin Mitchell Power of Attorney Webinar Banner

Webinar Recording: Power of Attorney and Deputyship (Past Event)

Outline schedule of activities planned for our National Event at the Mount Cook Activity Centre in August 2024

Mount Cook Weekend – Schedule of Activities (Past Event)

Undiagnosed Children's Day banner

Supporting Undiagnosed Children’s Day

SMS Family Adventure Weekend (Past Event)

Breaking Tradition: SMS Foundation’s Exciting Family Adventure Weekend in 2024!

The SMS Foundation UK’s Rebranding Journey

Supporting SMS Families for a Positive Future: Our 5-Year Development Strategy

Nigel Over working for the SMS Foundation

Recognising Nigel Over’s dedication to The SMS Foundation: Our heartfelt appreciation

Anne Smith presenting at 2017 SMS conference

Scientific Papers

Bridging the Gap: Insights from the SMS Community Survey

Cerebra Beond project website homepage

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

Proud finalist of Keele University Breaking the Mould awards

We’ve been shortlisted for an Award!

Transitions Community Chat (Past Event)

Medical management questionnaire graphic

Research Study into Medical and Behaviour Management

affection in SMS

Affection! Study Participants Needed

Does your SMSer get the support they need in their education setting?

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SMS Foundation UK logo

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

Please note: This is an answer phone service that will alert us as soon as a message is left. A member of the team will call you back as soon as possible – we aim to respond to messages within 48 hours.

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Registered UK Charity (CIO) 1186647

Scottish Charity (SCIO) SC050921

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