Privacy Policy

How we (PSDS) manage personal data

We want everyone who supports us, or who comes to us for support, to feel confident about how any personal information they share will be looked after or used. You can be confident that: We only use personal information in the ways we need to and that is expected of us. We will keep you up to date with our activities, including how we are campaigning to improve services, raising awareness, promoting understanding as well as our fundraising activities. But, we only use your personal information to do this if you have previously told us that you’re happy for us to do so. We will make it easy for you to tell us how you want us to communicate with you, including how to opt out from future communications – and we promise your request will respected straight away. We will never release your information to organisations outside PSDS for their marketing purposes. We will be especially careful and sensitive when engaging with vulnerable people or those we have reason to believe might be vulnerable. We take all reasonable care to safeguard your personal information through security policies and secure business processes.

1. How we collect personal information about you
We may collect personal information from you when you interact with PSDS. There are many occasions when this could happen, for example: if you enquire about our activities, register with us, make a donation to us, ask a question about Down syndrome, apply for a job or volunteering opportunity, if you chose to provide some optional feedback or otherwise provide us with personal information.

2. What information do we collect?
The personal information we collect might include your contact details such as name, date of birth, email address, postal address, as well as information you provide in any correspondence between us.   We may also collect health information if you tell us about your experience; however, you can decide if you want to remain anonymous or if you are happy to share your personal details. We also gather general information about the use of our websites, such as which pages users visit most often and which services, events or facilities are of most interest. We may also track which pages users visit when they click on links in PSDS emails. We may use this information to personalise the way our website is presented when users visit it, to make improvements to our website and to ensure we provide the best service for users.

3. Cookies
‘Cookie’ is a name for a small file, usually of letters and numbers, which is download onto your device, like your computer, mobile phone or table when you visit a website. They let websites recognise your device, so that the sites can work, or work better, and also gather information about how you use the site. A cookie, by itself, can’t be used to identify you.  How do we use cookies? We use cookies to distinguish you from other users of our website. This helps us to provide you with a good experience when you come to our website and also allows us to improve our site. No cookies, please. You can opt out of all our cookies (except the strictly necessary ones). Find out how to control and delete cookies in your browser. If you have any questions about how we use cookies, please contact us.

4. How do we use personal information?
We may use your personal information to: Provide you with the important advice and support you’ve asked us for, whether this be over the phone, through our publications or other services; Provide or administer activities relating to all our services: updating you with administrative messages, to help us identify you when you contact us, and help us to properly maintain our records; Improve your experience with us. We may use your information to enhance the service that our team provides, to improve our information and communications, or to personalise the website to better suit your needs; Provide you with information about our plans. This may be letting you know about new or enhanced services that we hope will be useful and interesting to you, and may include fundraising updates; of course, we will only do this either with your consent, or where we believe you will expect to be updated and contacted by us. You can of course ask us at any time  to change how we contact you, simply contact We may need to disclose your information if required to do so by law.

5. Your choices
We’d like to keep our all valued supporters up to date with our progress. So, to update you on what we’re doing and ask whether you’d be able to support us, where we are able to, we’d like to keep in touch with you (by post, phone, email, and other electronic means) about our progress and how you can continue to help us.

6. Who sees your personal information?
The personal information we collect about you will be used by the Trustees and support teams at PSDS, so that they can support you. We will never sell or share your personal information with organisations so that they can contact you for any marketing activities. Nor do we sell any information about your web browsing activity.

7. Your Information Security
We take the security of your personal information extremely seriously. We will only keep it as long as is reasonable and necessary, which may be to fulfil statutory obligations (for example, the collection of Gift Aid).

8. How to update or access your personal information
You may ask us at any time to update your details, correct or remove information you think is inaccurate by contacting us at You also have a right to know what personal information PSDS holds about you. To request a copy of your personal information we hold, contact us at

9. Changes to our Privacy Policy
Our Privacy Policy is reviewed regularly to ensure that it reflects how we use your information. Any changes will be notified to you by updating this policy so please check this Policy to see if any changes have been made that are important to you. Where appropriate, changes will be notified to you by email.

This Privacy Policy (version 1) was last updated on 17th February 2018