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Our Privacy Policy

RLS-UK is a UK wide registered charity number 1140744 providing help and support to people living with Restless Legs Syndrome (RLS) and Periodic Limb Movement Disorder (PLMD).   We are committed to protecting your personal information and being clear and transparent about what information we hold, and how we collect and use the information you provide to us, in accordance with applicable data protection law: being for these purposes the Data Protection Act 2018, Privacy and Electronic Communications Regulations 2003 and the UK General Data Protection Regulation (collectively, data protection law). 

The personal data we hold is information that can be used to help identify an individual, such as name, address, phone number or email address. Some categories of personal data are more sensitive and are referred to as special category data such as ethnic origin, sexual orientation – we do not collect any special category data.  

We only collect the information that we need or that helps us to provide our service to you and to fulfil our legitimate charitable aims and objectives.  We do not share any personal data with other organisations without your consent.  We keep in touch with people mainly via email to share our e-news, information about events such as our annual meeting and sending out our Newsletter.

In certain instances, we collect and use your personal information relying on the legitimate interest legal basis. In broad terms, ‘legitimate interests’ means our interest in being able to run RLS-UK effectively in pursuit of our aims as a charitable organisation.  

We may use your information for several purposes including: 

  • To process donations you have made

  • To update you about our work and activities.  From time to time these updates may include requests for financial support

  • For administration purposes (for example, we may contact you regarding a donation you have made or the event you have registered for)

  • To claim gift aid on your donation if you have agreed that we can do so

  • To invite you to participate in surveys or research


When you donate money to or fundraise for RLS-UK we will collect and process information about you. This information may include financial details, name, email address, postal address, telephone number, date of birth.

If you have made a Gift Aid declaration, we may disclose the information you have provided as part of the declaration to HMRC for the purpose of reclaiming Gift Aid on your donation(s).


When you donate via our website, the data is stored securely for a limited period of time. When you donate to our charity via our carefully chosen online providers, for example PayPal, Stripe or Just Giving websites, they will have their own separate privacy statements, and we would recommend that you read these before donating.

The Charity uses various social media channels to communicate with you and share information about campaigns or events. We do this through advertising on your social media or through posting messages and information on our own social media pages which you may choose to “like”, “follow” or interact with.  

We take your privacy and rights seriously but still deem your interest to us important. For this reason, we use our legitimate interest to use your information and communicate with you in this way. Therefore, we will not ask for your permission to market to you through social media, but you are always free to inform us that you do not want us to contact you in in this way by contacting us via our website. You can also change your settings on the social media platform to stop this kind of targeting from specific or from all advertisers.


Please note that we recommend that users read and understand the T&C’s and Privacy Policies of the respective social media platforms they are signed up to. 

We do our utmost to keep personal information as secure as possible, including authentication and encryption technology on all our websites and applications.  We only share personal data in limited lawful circumstances, such as under a strict contract required by data protection law or where we are required by law. We do not share your personal data with other companies or charities for any purpose unless explicitly agreed with yourself in advance or unless the data is anonymised and unattributable to you.

We do not ever share or sell personal information to third parties for marketing purposes.

We collect three broad types of information: 

  • Technical information such as IP addresses (the location of the computer on the internet), device identifiers, pages accessed, and files downloaded. This helps us to understand how many people use our apps and websites, how many people visit on a regular basis and how popular/useful our web pages are. This information doesn’t tell us anything further about who you are. 

  • We will ask for personal information to provide you with services and to conduct research; inform decision making that helps us meet our core aims (for example identifying underrepresented demographics); send you details of our activities; or to raise awareness of neurological conditions. 

  • We may ask you for stories about your experience of living with RLS.  We do this so we can provide you with relevant information, to support you and to ensure we can understand your reality. We also do this to ensure we are representative and reaching everyone in the community we serve. We do this in fulfilling our legitimate activities as a not-for-profit organisation, as permitted by data protection law, but do not share such information with third parties except as agreed to by you. We may also make the information public, or to use with your consent for a particular purpose (for example, if you agree to share your story with us). 


RLS-UK website may use cookies and other tracking technologies when visiting our websites, including any other media form to help customise the site and improve your experience. 

Like most organisations, we have cookies on our website. Cookies are tiny pieces of data saved on your computer or mobile device. There are several types of cookies and they each have different functions or uses and are mainly for analytical purposes to tell us what people look at most and whether our website is working as it should. 

We will ask you for a positive opt-in to say how you would like us to stay in touch – by email or post – to keep you up to date with the work of the charity.   If you have given us your postal address, we may send you communications by post.  If you have indicated that you do not wish to be contacted, we will retain your details on a suppression list to help ensure that we do not continue to contact you. 

Safeguarding is everyone’s responsibility, and therefore we have a duty, wherever possible, to share any concerns (including with names and contact details where necessary, and with or without notice or reference to you) that we have about conversations, emails, posts, messages, replies, questions, or comments that indicate you or someone else might be at risk, with the relevant authorities. This includes reference to or indication of abuse or neglect.


When you give us your details, you agree to us recording your details on our secure database, so we can provide you with the best possible service every time you contact us. 

We hold your personal information so that we can fulfil your interest in being part of our community, to provide you with the information or services you have requested, to administer your relationship with us, to inform our research, to inform our supporters’ preferences, to comply with the law or to ensure we do not communicate with people who no longer wish to hear from us.  

We have developed a data retention approach that informs the different periods we retain your personal information for in respect of these relevant purposes. These are based on various legal requirements on us a charity and guidance issued by relevant regulatory authorities including, but not limited to, the Information Commissioner’s Office (ICO) and Charity Commission. 

Some personal information may be retained by us in archives for statistical or historical research purposes although we will do this in a manner that complies with applicable data protection law.   

We continually review what personal information and records that we hold and delete what is no longer required. We never store payment card data after a transaction has been completed. 

We strive to keep the use of paper records to a minimum, securely storing information in digital form. When paper records are used, they are stored at B&SF offices based in the UK. These offices are securely locked when no members of staff are present, and access is restricted and monitored during the working day.  

In line with the principles defined in data protection law, we will ensure that personal data will be processed in ways that are: 

  • Lawful, fair, and transparent

  • Collected for specific explicit and legitimate purposes

  • Adequate, relevant, and limited

  • Accurate and up to date

  • Not kept for longer than necessary

  • Secure


This notice complies with your right to be informed about how your data is used.  You have a right to access certain personal data being kept about you, either physically or digitally. Anyone who wishes to exercise this right should apply, in writing, to the RLS-UK via the address on our website.  Please include details of the information you wish to access. We will respond within one calendar month, providing that the request includes appropriate contact details, proof of identity from the individual and we can validate the request. We may need to confirm these details with you or seek further clarification of your request before we can process it.  You may also ask for any data we hold about you to be removed from our records. 

If you are unhappy at any time about the way we process and/or use your personal information, please contact us and we will investigate your concerns.  We appreciate the opportunity your feedback gives us to learn and improve. If you are unhappy with the way your data is being processed, and we have been unable to satisfactorily resolve your concern, you have the right to complain to the Information Commissioner’s Office (ICO). 


September 2023

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