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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).

Newly Diagnosed?

Information & Resources

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Find guidance, practical tools, and reliable information to help you better understand and support someone with SMS. This section brings together advice for families, carers, and professionals, covering key topics from health and behaviour to education and daily life.

Graphic illustration of a group of professionals planning around a table

The Child Before the Plan: Why Person Centred Planning Matters in SEND Education

Category: EducationTopic: EHCPs
abstract illustration of education planning

Delivery of EHCP Provision for Children with SMS

Category: EducationTopic: EHCPs
infographic showing the golden thread running through an EHCP

Making the EHCP Work for a Child With SMS

Category: EducationTopic: EHCPs
illustration of concept of child to adult development

Why the Right Outcomes Unlock Potential for Children with SEN 

Category: EducationTopic: Transition Planning
illustration of education planning symbols

A Guide to EHCP Transitions and Legal Deadlines

Category: EducationTopic: EHCPs, Transition Planning
illustration of child climbing education charts

School Transition Planning for Children with SMS

Category: EducationTopic: EHCPs, Transition Planning
SEND illustration of teacher and student

EHCPs: A Guide for SMS Parents and Carers

Category: EducationTopic: EHCPs
SEND Webinar banner

A Guide to the EHCP Process (Webinar Recording)

Category: EducationTopic: EHCPs
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Webinar: Navigating the Annual Review (PAST EVENT)

Category: EducationTopic: EHCPs
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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Connect with SMS families in your region and be the first to receive updates on any social meetings, conferences, and fundraising events going on!

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Registered UK Charity (CIO) 1186647

Scottish Charity (SCIO) SC050921

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