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support services privacy notice

When you contact SMA Support UK Information and Support Service, your contact information and brief details of your enquiry are stored carefully and held securely using our computerised database. We use this information to assist you with your enquiry. 

If you have a lot of contact with us:

If your contact with our service is for more than a ‘one off’ information call, we will need to gather and record relevant personal information so that we can provide you with the most effective support service. We may, with your permission, need to gather information from other health and social care professionals supporting you. Your information may be shared within our Support Services Team.

Whatever contact you have with us:

Your personal information and any child’s personal information, will never be disclosed to anyone else unless it is necessary as part of our support service. You will always be asked if you agree to this. The only exception to this is if we are ever concerned that someone is a danger to themselves or others or we believe a child or adult is at risk of harm. We also keep in touch with the UK SMA Patient Registry. We don’t share your or any child’s personal contact information with the Registry Curator but we do let them know if you tell us of a significant change in your circumstances that will affect your participation in the Registry.

We produce statistical returns and reports about our services and the feedback we receive. Any information used in this way is always anonymous.

How long we keep information:

If you no longer wish to receive our services, we normally keep your and any child’s records for seven years in case you decide to come back to us. Contact includes being in contact via our monthly E-news or our twice-a-year ‘Inspirations newsletter - if you have chosen to subscribe to either of these. After this your record is deactivated.

You may at any time ask to see copies of any information we hold about you.


Last reviewed and updated October 2017.


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