Support Services Privacy Notice

If you contact SMA UK Information and Support Services via our website, you are asked to consent to our holding and processing your information so that we can assist you with your enquiry. We give you the link to this notice so that you can read more about how we do this.

If you have contacted us by phone or another way, it’s not always easy or appropriate to interrupt you and ask you for your consent to hold and process your information. In this case, we initially use the General Data Protection Regulation (GDPR) test of whether we have a ‘legitimate interest’ which allows us to do this. This test is ‘are we using your personal data in a way that you would reasonably expect and which will have a minimal impact on your privacy?’ We believe the answer is ‘yes’. We do though prefer to have your active consent to hold your information so, if we have contact details for you, follow up with you later to give you this opportunity. You can read more about this here.

We hope our explanations below of what we do with your personal information, why and how, will reassure you our practices are lawful and of a high standard, but please don’t hesitate to get in touch and ask more questions if you wish. Please do share this notice with members of your family, especially if you are contacting us about a service for your child(ren) and they are of an age at which it is helpful to make them aware of the need to protect their privacy and personal information and ask questions about it (the GDPR suggests age 13+).

What information do we hold and why?

We record your contact information and brief details of your enquiry. We use this information to assist you with your enquiry. So that we can keep track of our contact with you and continue to help you, we record brief details of any phone calls and email / other exchanges we have.

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 about you and your family and the people who support you, so that we can provide you with the most effective support service. If you are an adult with SMA, this may include information about your SMA and how this impacts on you. If you are a parent, this may include information about your child(ren), their SMA and how this impacts on them and you

To work out how best to assist you, we may also, 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.

We do our best to make sure your information is up to date and accurate. We rely on you to tell us if any of your contact details change. You can read more about this here.

Where do we keep your information?

Your information is kept securely on our database. You can read about how this is protected, here.

Who has access to this information?

Only staff working at SMA UK have access to this information. They have access to your support service record, your offers to help and your donations (if you have made them). However, all staff sign and adhere to a strict code of confidentiality and conduct which specifies that they must only access information that they ‘need to know’ to fulfil their job requirements.

Staff only access the parts of your record they need to fulfil their job requirement. They sign and adhere to a strict code of confidentiality and conduct which specifies that they must only access information that they ‘need to know.

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 or we are required to do so by law.

If you are interested in clinical trials, you may have registered with the UK SMA Patient Registry. We keep in touch with the registry so that they can efficiently keep in touch with people. We let the Patient Registry Curator know if we have been told of a significant change in an adult/ child’s circumstances that will affect their participation in the Registry. We don’t share any other personal information with the Curator.

We produce statistical returns and reports about our services and the feedback we receive. Any information used in this way is always anonymous unless we have your permission to identify you.

How long do we keep your information?

If you no longer wish to have contact with us, we normally keep your and any child’s records for seven years. Our experience is that people often come back to us for further advice / support and it can be very helpful to have a record of previous contact, saving people a lot of time telling us about their situation. ‘Contact’ includes being in contact via our monthly E-news or our twice-a-year ‘SMA Matters newsletter - if you have chosen to ‘opt in’ to either of these. After this your record is deactivated. You can read more about this here.

Can you ask to see your information and check it is correct?

You may at any time ask to see copies of any information we hold about you. You may check it and ask for it to be corrected or deleted. We will respond promptly to your request, but if we were concerned that this could mean that someone would be a danger to themselves or others or we believed a child or adult is at risk of harm we may not be able to make the requested change. We would discuss this with you. You can read more about this here.


Last reviewed and updated July 2020.