Privacy policy, cookies and your data

At Alzheimer’s Research UK we respect your privacy and are committed to protecting your personal information in line with Data Protection Law.

We constantly review how we use your information to aid us in our mission to overcome dementia. This page details our approach to privacy and how we use and store information. It applies to the personal information of our supporters and potential supporters. Job and volunteer applicants can find out about how we process their personal information by reading our Applicant’s Privacy Notice located here.

If you have any questions, or want to check, change or update your details at any time please contact us.

By Post: Alzheimer’s Research UK, 3 Riverside, Granta Park, Great Abington, Cambridge CB21 6AD

By Phone: 0300 111 5555 or 01223 824 500.

By Email: [email protected]

Last updated: January 2018

Our policy

1. Who we are

Alzheimer’s Research UK is the UK’s leading research charity dedicated to making life-changing breakthroughs in dementia research.

Our registered charity numbers are 1077089 in England and Wales, and SC042474 in Scotland. Alzheimer’s Research Trading Limited (registered company number 03880026) is a wholly owned subsidiary of Alzheimer’s Research UK which trades on our behalf. When we use the word ‘we’ in this policy, it means both the charity and its subsidiary.

We strive for the highest possible standards in our fundraising, are registered with the Fundraising Regulator and are committed to complying with its Fundraising Promise.

2. Your data – what information we collect

Information we obtain about you directly

This covers information that you have chosen to tell us directly yourself. When you get in touch with us to make a donation, request information or support us in any other way, we may process the following types of personal information about you:

  • Name
  • Contact details (e.g. address, landline and mobile number, email address).
  • Your interactions with Alzheimer’s Research UK. This could include your donation history; your responses to our communications; information you’ve shared with us about why you have supported us; events, meetings and fundraising activities you’ve taken part in or shown an interested in; volunteering you’ve done to help us and gifts you’ve made in honour of others on our website.
  • Financial information.
  • The country you are in.
  • Date of birth.
  • Any preferences about your interests and how you like to be contacted.

We do not usually ask you for sensitive personal data unless there is a clear reason for us to do so. However we may need to ask for sensitive information about your health, for example, if you are participating in an event. You may also wish to share information about your health if you decide to speak out about your experience of dementia. If you do, we will always treat it sensitively and ask you on every occasion if you are still willing to share it further in the form of case studies or media interviews.

Any sensitive information shared through the Dementia Research Infoline will be treated confidentially as outlined in Section 9 of this Privacy Notice.

Information you give to us indirectly

This covers information that you don’t share with us directly but that is shared with us by other organisations with your permission. This might happen if you have used independent fundraising platforms (e.g. JustGiving or Virgin Money Giving) or if you’ve set up an online tribute page in memory of a loved one (e.g. Much Loved). We’ll only receive your information from these companies if you have given permission for them to share it with us.

We may also record and share information that you have shared with us publicly on social media (e.g. Facebook or Twitter). We may on occasion use your email address to communicate with you via social media sites, where you have provided us with that address. For example those supporters who signed up to take part in Running Down Dementia one year may receive notifications on their Facebook timeline explaining that Running Down Dementia is happening again.

We may ask your permission to review third party data about you through social channels, for example, your Twitter or Facebook feeds, to get to know you better and to provide more effective personalisation. Some of our services enable you to sign-in via a third party service, such as Facebook. If you choose to sign-in via a third party app, you will be presented with a dialogue box which will ask your permission to allow Alzheimer’s Research UK to access your personal information (e.g. your full name, date of birth, email address and any other information you have made publicly accessible). Please note that any information that is not required by the particular service you have opted to use will not be retained.

If you have provided consent for another organisation to share your personal information with us, but you no longer wish to hear from us, you can change your mind at any time. Just contact us using the information at the top of the page.

Information about you obtained from third parties 

This covers information that has been shared with us about you by someone else, for example from a friend who wants to send you a gift or make a donation in your name.

We may also collect personal information about you from service providers, the press, search engines, social media (e.g. LinkedIn) and reputable public data sources (e.g. Companies House, BoardEx, the Charity Commission, Land Registry).  Personal information we may collect via these channels may include your job title, directorships, contact information, demographic data (including estimated income and property value), date and size of previous donations to other charities, details of philanthropic activities you engage in, etc. We may use this information to build a profile of you (i.e. your interests, preferences, demographics and level of potential donations) to enable us to tailor fundraising efforts and communications based on your circumstances and interests, and how likely you are to support Alzheimer’s Research UK’s work. This helps us understand our supporters better and helps us make appropriate requests for support or gifts to supporters who might be able and willing to give more than they already do, and ensures that we are making the best use of our resources. 

We may combine information we have obtained about you from these third party sources with other information that we hold about you for this purpose and the purposes described in Section 3 below.

3. How do we use your information?

We may use the personal information we collect to:

  • Provide you with the information, service or product you have asked for.
  • Administer any donation you have given us, support your fundraising and process Gift Aid.
  • Build a detailed picture of your interests and preferences so that we can tailor our services, communications and financial asks to suit you.
  • Let you know about the latest research and how your support makes a difference, as well as ways you can get involved and help fund our life-changing work.
  • Understand how you use and interact with our products and services (e.g. our website) to enable us to make improvements.
  • Comply with legal and regulatory requirements and protect against fraud.
  • Help diagnose problems with our website and server, administer our website, compile broad statistical data and update and maintain our website.
  • Ensure security and detect and protect against fraud.
  • Further our charitable aims.

As outlined in Section 2, we may use profiling and screening techniques to build a profile of you, including your interests, preferences, demographic information and potential ability to financially support our work in future. This helps us to tailor our asks for support, and identify and further engage those supporters who may be willing and able to provide a transformational gift to support life-changing research.

Your information is only used if we have legal grounds to do so which might be because you have provided consent; it is necessary to allow us to deal with your request, enquiry or purchase; we have a legal or regulatory obligation to do so; or the information is being used legitimately to further our charitable aims.

4. Who we share your personal information with

We do not swap, sell or rent your personal information to anyone.

As part of our day-to-day work, we may engage service providers who operate on our behalf. In these circumstances, they will only have access to the personal information they need to fulfil that service and will only use that information for the purposes for which they have been instructed by us. Examples of service providers include a printer who is personalising the communications we send to you or a payment provider who processes donations for us.

If we are asked to share your details with other organisations that aren’t our service providers, we will only do so if:  we have your permission; we have a legal or regulatory obligation to do so; we need to enforce any agreements we have with you or investigate any complaints; we need to protect the rights, property and safety of Alzheimer’s Research UK and its supporters; or we merge or link with another charity.

5. Where we store your personal information

For the most part, your personal information will be stored in the UK. However, there may be rare occasions when your information is transferred outside the UK to areas with less strict data protection laws compared with those in the UK and the European Economic Area (EEA).

If this does happen, we take legally-required steps to make sure that adequate safeguards are in place to protect your personal information and privacy rights. If you would like a copy of these safeguards, please contact us using the details at the top of the page.

6. How long we keep your personal information

Without your support we simply wouldn’t exist and because of this we value every interaction we experience with you.  We believe it’s important to remember our history together especially if you get back in touch with us or leave us a gift in your Will.

However, as with all relationships, we know that things can change and we understand that you may choose to have a break from supporting Alzheimer’s Research UK.

Therefore, if we don’t hear from you at all after 3 years we will stop marketing to you and after 5 years of inactivity we will treat your data in accordance with our data retention policy which may mean deleting or archiving it. Please also be assured that we never store credit card details under any circumstances.

You have the right to request that we delete your details at any stage.

By Post: Alzheimer’s Research UK, 3 Riverside, Granta Park, Great Abington, Cambridge CB21 6AD

By Phone: 0300 111 5555 or 01223 824 500.

By Email: [email protected]

7. Your rights and how to make a complaint

We talk to you on your terms. You have the right to opt-out of marketing and fundraising communications and you can change your contact preferences at any time. You may also opt-out of the profiling and screening described in Section 3.

To exercise any of these rights, or to change or update the information we hold about you, please contact our Supporter Care team using the details at the top of the page.  You can also click on the ‘unsubscribe’ button on all marketing and fundraising emails to opt-out of receiving future communications from us by email.

You may have the right to request access to, or deletion of, personal information we hold about you. You may also be able to restrict how we use your information. Please contact us if you would like to exercise any of these additional rights and we will assess your request on a case by case basis in line with Data Protection Law.

If you have a complaint about how we use your personal information, please contact us. If you are not satisfied with our response, you may lodge a complaint with the Information Commissioner’s Office.

8. Cookies & online privacy

‘Cookies’ are small text files that record information on your computer about the websites you visit and how you use them. Our website uses cookies to help us understand who is visiting our website, how they interact with it and to make sure it’s working effectively. We do not access any information stored in cookies placed on your machine by other websites.

If you would like to stop our cookies from being stored on your computer in future, you can do so by following instructions on your Internet browser. You can do this by clicking on the Help menu. If you do turn off our cookies you may not be able to access certain services or facilities we offer.

Further information about deleting or controlling cookies is available at www.aboutcookies.org. One way to control cookies is through Google Analytics’ opt-outs for the web tool.

We also use some of Hotjar’s and Google’s services to help us see how well our website is working and to show people information through some of Google’s websites and partner websites. You may see Alzheimer’s Research UK promoting our work on some of the webpages you visit, and some of these adverts are related to your location and interests or your interactions with our website. We also advertise on sites such as Facebook using similar behavioural and targeted advertising technology. For more information about how cookies and online advertising work or how to control your privacy online, please visit the www.youronlinechoices.com/uk.

9. Contacting the Dementia Research Infoline

Any information provided to the Dementia Research Infoline will be treated confidentially, in accordance with Data Protection Law and this Privacy Notice.

Every enquiry to the Infoline will be logged using an anonymous call logging system. This allows us to track the volume and nature of enquiries to help us make the service as effective as possible.

Personal information provided to the Dementia Research Infoline will only be used to help us deal with your enquiry. All data collected for this purpose is destroyed within a maximum of six months from collection.

Any information that is provided to Infoline staff during registration into Join Dementia Research is dealt with in accordance with the Privacy Notice outlined on the Join Dementia Research website.

We may ask you whether you would like to be kept up-to-date with our work and how you can financially support us and allow you to opt-in to a range of communications from Alzheimer’s Research UK. If you do, we will process your information as outlined in the sections above.

10. Dementia Explained Memory Board

Information provided when making a contribution to the ‘Memory Board’ on the ‘Dementia Explained’ website will be confidential and used solely for the purposes of making the submission.

Only the first name and age of the child/children involved with the submission will be publicly visible. If you would like the submission to be completely anonymous please don’t enter this information.

We will make contact with you to verify information about your submission.

11. A Place to Remember

A Place to Remember provides a virtual space for you to remember a loved one. On the website we will therefore publically display a Google image of the co-ordinates you provide, your message and the name of the loved one you have entered alongside a photograph if you have chosen to upload one.

We will also keep a record of the co-ordinates you provide, the name of your loved one and your name, address and a record of your gift, if you have chosen to give one as part of our internal database. This information will be subject to our internal data proceedures as outlined throughout this notice.