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SMS Foundation UK

Supporting SMS families for a positive future

  • What is SMS?
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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?

Support for Parents & Carers

Our Services

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Parent & Carer Enquiries

If you’re a parent or carer with a question, concern, or need for support use this form to get in touch.

Get SupportParent & Carer Enquiries

Rareminds Counselling Service

Specialist counselling for parents and carers through our partners at Rareminds.

Get SupportRareminds Counselling Service
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SEND Consultancy Service

Expert SEND consultations, by referral through the SMS Foundation.

Get SupportSEND Consultancy Service

Information and Resources

Support in a Crisis

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Statement Describing SMS for Assessments and Forms

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CAMHS: Where to Start, Who to Ask, What to Expect

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Support For Families Reaching Crisis Point

Help and Practical Advice

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How the Access Card can Help People With SMS

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Becoming a DWP Appointee

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Turning 18 with SMS: PIP and Universal Credit

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Applying for DLA for a Child with SMS

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Statement Describing SMS for Assessments and Forms

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Understanding the Move from DLA to PIP

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Support For Families Reaching Crisis Point

Newlife’s Emergency Equipment Loan Service

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Other Support Organisations

Health

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CAMHS: Where to Start, Who to Ask, What to Expect

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General Health Advice and Guidance

Webinar - featured image

Understanding Cerebral Visual Impairment (Webinar Recording)

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Cortical or Cerebral Visual Impairment

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Seizures and SMS

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Myopia

Introduction to vision in SMS

Strabismus

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Cataracts

nystagmus types

Nystagmus

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Detached Retina

Education Guidance

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Delivery of EHCP Provision for Children with SMS

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Making the EHCP Work for a Child With SMS

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Why the Right Outcomes Unlock Potential for Children with SEN 

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A Guide to EHCP Transitions and Legal Deadlines

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School Transition Planning for Children with SMS

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EHCPs: A Guide for SMS Parents and Carers

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A Guide to the EHCP Process (Webinar Recording)

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Webinar: Navigating the Annual Review (PAST EVENT)

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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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Become a Member of The SMS Foundation UK

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

Family & Carer Membership
Professional Membership

Registered UK Charity (CIO) 1186647

Scottish Charity (SCIO) SC050921

Registered with the Fundraising Regulator

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