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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?

Research Study into Medical and Behaviour Management

July 20, 2022

We want every individual with SMS to have coordinated care!

For all our SMS families, care is never about a single visit to a single service. Good care seamlessly moves between services – between the GP, hospital, and back again.

Sometimes this seems like an impossible goal.

We want to help you through this process. We are currently producing a passport-style document for you to give to professionals which will describe everything about SMS and how it impacts your SMSer – reducing the burden on you to explain your SMSer.

This starts with us learning about your SMSer’s health and behaviour, and where your concerns lie.

If  you are a parent/carer for an individual with SMS please help us in gathering valuable evidence by completing this questionnaire. It will only take approximately 8 minutes, and this will enable us to produce a document which will save you answering all the questions professionals will have about the features of SMS and how the SMSer is affected by different conditions and behaviours.

Medical and Behaviour Management Questionnaire

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Category: Research
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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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Registered UK Charity (CIO) 1186647

Scottish Charity (SCIO) SC050921

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