1. Introduction

The National Brain Appeal is committed to protecting your privacy. This policy explains how and why we collect and use your personal data and how we contact you.

You can choose not to receive communications or change how we contact you at any time – either by calling the office on 0203 448 4724 (lines open Monday – Friday from 9am to 5.30pm) or emailing info@nationalbrainappeal.org

The National Brain Appeal will never swap or sell your personal data with third parties and will only share it, when necessary, with suppliers that work with us to manage our data processing and mailings – and where safeguards have been put in place to protect your privacy. When information is passed from The National Brain Appeal to our contracted suppliers, this is transferred securely, is only used for the specific purpose and is deleted after the job has been completed.


The National Brain Appeal is a registered charity (number 290173). Our full legal name is: The National Hospital for Neurology and Neurosurgery Development Foundation. The charity is dedicated to funding The National Hospital for Neurology & Neurosurgery and the Institute of Neurology, Queen Square, London. Our vision is to improve the outcome and quality of life for the one in six affected by a neurological condition. We do this by funding pioneering research, providing access to the best technology for expert diagnosis and treatment, and training tomorrow’s clinicians. We have a small team of staff working to raise awareness and funds.

As well as in-house training, every team member must complete (and pass) annual Information Governance training (provided through the UCLH NHS Trust) and our privacy policy and data protection procedures are reviewed on a regular basis.


We collect personal data when you contact us, make a donation, fundraise for us, buy something from our online shop and through website cookies (see also 3.4 below). We may also collect personal data received via third parties such as JustGiving, Virgin Money or Run for Charity. However, these organisations will only share your data if you have given your clear consent. They type of data we collect is:

  • personal details (name, date of birth, email, address, telephone etc.)
  • financial information (payment information such as credit/debit card or direct debit details, and whether donations are gift-aided. For more information, see our full Privacy/Cookies Policy https://www.nationalbrainappeal.org/privacy-cookies-policy/
  • information you choose to share with us about a health condition that you or a family member are affected by.
  • details of your preferences (such as campaigns, the ways you support us or areas of interests around research or specific neurological or neuromuscular conditions).

3.1. Information created by your involvement with The National Brain Appeal

When you connect with The National Brain Appeal – for example by sponsoring a family member or friend, buying something from our shop, attending one of our events or as a volunteer – we will create a record of you on our database to show how you got involved. If you make a donation then we will keep records of when and how much you give and your reason for giving (if you share this with us).

When you receive a communication, we may collect information about how you respond to or interact with that communication, and this may affect how we communicate with you in future.

3.2. Sensitive personal data

From time to time, we record and store sensitive personal data (such as information relating to specific health conditions) to help us understand more about what motivates you, allow us to plan our work and, ensure our campaigns are relevant, or if there is a clear reason for doing so (such as participation in an event where we need this information to ensure we provide appropriate facilities for you).

We may also collect health information if you tell us about your experiences of the hospital (for example, if you act as a case study for us); however, we will make it clear to you when collecting this information as to what we are collecting and why.

In all such cases, we will explain why we may record this data but we won’t do so without your consent. If you do give your consent, you can change your mind at any time and ask us to delete any sensitive data.

The National Brain Appeal does not access medical records and never shares sensitive personal data.

3.3. Volunteers

If you have expressed interest in becoming, or are a volunteer, with The National Brain Appeal, you will be asked to give us your personal details on a volunteer form and we may collect extra information about you (e.g. references, criminal records checks, details of emergency contacts, medical conditions etc.). This information will be used to tell you about and organise any volunteering opportunities and will be retained for legal reasons, to protect us (including in the event of an insurance or legal claim) and for safeguarding purposes.

We will keep in touch with you through our monthly e-newsletter, in order to keep you up to date with the charity’s work, although you may opt out of this at any time through a link at the bottom of the email.

3.4. Site usage tracking – Cookies

To make our website simpler, small data files are placed on your computer. These are known as cookies. Most websites have cookies. They improve things by:

  • Remembering settings, so you don’t have to keep re-entering them whenever you visit a new page
  • Remembering information you’ve given (e.g., your postcode) so you don’t need to keep entering it
  • Measuring how you use the website so we can make sure it meets your needs

Our cookies aren’t used to identify you personally. They’re just here to make the site work better for you. Indeed, you can manage and/or delete these small files as you wish.

To learn more about cookies and how to manage them, visit AboutCookies.org.

We use Google Analytics to collect information about how people use our site. We do this to make sure it’s meeting its users’ needs and to understand how we could do it better. Google Analytics stores information about what pages you visit, how long you are on the site, how you got here and what you click on. We do not collect or store your personal information (e.g. your name or address) so this information cannot be used to identify who you are.

There are also cookies that store basic data on your interactions with WordPress, the Content Management System (CMS) running the website.


We will only use your data with your personal consent or where it is necessary to:

  • provide you with the information that you have requested
  • thank you for your support
  • claim Gift Aid on your donation from HMRC
  • process entries into a prize draw or raffle or auction and silent auction bids
  • enter into, or perform, a contract with you
  • comply with a legal duty
  • protect your vital interests
  • for our own (or a third party’s) lawful interests, provided your rights don’t override these.

We will only use your information for the purpose or purposes it was collected for (or else for closely related purposes and you can change your preferences at any time.

4.1. Administration

We use personal data for administrative purposes (to carry on our charity work). This includes:

  • receiving donations (e.g. direct debits or legacy or gift-aid instructions)
  • maintaining databases of our supporters and volunteers and recording our relationship with you
  • fulfilling orders for goods or services (whether placed online, over the phone or in person)
  • helping us respect your choices and preferences (e.g. if you ask not to receive marketing material, we’ll keep a record of this).

4.2. Newsletters and publications

Our newsletter, The National, is provided as a benefit to you. We post this to all our supporters (unless you ask us not to) and you can choose to unsubscribe from general marketing communications without giving up your subscription to The National.

4.3. Marketing

Marketing does not just mean offering things for sale, but also includes news and information about:

  • the charity and the work we support at Queen Square
  • volunteering opportunities and how you can help
  • appeals and fundraising (including donations, competitions and raffles)
  • our events and activities
  • charity products (such as merchandise or Christmas cards which may interest you)
  • leaving a legacy
  • taking part in projects (e.g. A Letter in Mind).

We use personal data to:

  • communicate with our supporters
  • promote The National Brain Appeal
  • help with fundraising. This includes keeping you up to date with our news, updates, campaigns and fundraising information.

4.4. Fundraising

As a charity, we rely on donations and support from others to continue our work. From time to time, we will contact our supporters about an appeal, an event, a competition we’re running, or to suggest ways you can raise funds (e.g. a sponsored event or activity, or even buying a product). You can, of course, unsubscribe from our communications at any time by emailing info@nationalbrainappeal.org or calling the office on 020 3448 4724 (Monday – Friday from 9am to 5.30pm).

4.5. Internal research and analysis

We may carry out research and analysis on our supporter, donor and volunteer data, to determine the success of our activities, better understand behaviour and responses and identify patterns and trends. This helps inform our planning and makes The National Brain Appeal a stronger and more effective organisation. Understanding you (as one of our supporters), your interests and what you care about also helps us provide a better experience (e.g. through more relevant communications). We would carry out any research or analysis under Legitimate Interest.

You can decide whether you want to receive marketing communications from The National Brain Appeal or change how we contact you at any time. You can also request that your data is not used for research and analysis purposes.

If you wish to do so please call the office on 0203 448 4724 (lines open Monday – Friday from 9am to 5.30pm) or emailing info@nationalbrainappeal.org

4.6. Anonymised data 

We may collect and anonymise personal data so that it can no longer be linked to any particular person. This information can be used for a variety of purposes, such as recruiting new supporters, or to identify trends or patterns within our existing supporter base.  This information helps inform our actions and improve our campaigns, products/services and materials.


Our staff and consultants may have access to your data – along with suppliers (such as a mailing house) when they carry out work on our behalf.

We will never sell or swap your personal data

We may share personal data with suppliers who provide us with services. For example, if you have subscribed to The National newspaper, your name and address will be shared with the mailing company. However, these activities will be carried out under a contract which imposes strict requirements on our supplier to keep your information confidential and secure.

We may also need to share data, if requested, by statutory agencies such as the police including for the purposes of fraud and credit risk reduction.


This section explains how and why we use personal data to build profiles which enable us to understand our supporters, improve our relationship with them, and provide a better supporter experience.

6.1. Profiling to help us understand our supporters

From time to time we may use specific public sources (for example social media, news stories or publications) to profile our supporters. If we subsequently contact you on this basis, we will always let you know what our information sources were. We would carry out profiling under Legitimate Interest.

We may use third-party suppliers to carry out profiling on our behalf and share your data with them. However, these activities will only be carried out under a contract which imposes strict requirements on our supplier to keep your information confidential and secure.

We may also profile our supporters in terms of financial and practical support. For example, we keep track of the amount, frequency and value of each person’s support and/or events attended. This information helps us to understand what motivates our supporters and to ensure we make appropriate requests for gifts from those who may be willing, and able, to give more than they already do and/or to promote opportunities such as legacy giving.

If, based on information that we hold (such as previous donations, ticket purchases or charitable giving history), it appears an individual might be willing and able to provide more support towards our mission to fund advances in neurology and neurosurgery, we may contact them to see if they wish to do so.


7.1. Information for parents

We take great care to protect and respect the rights of individuals in relation to their personal data, especially in the case of children. If your child is under 16, we’ll only use his or her personal data with your consent. This means that, for example, if your child wants to have his or her name or picture featured in The National newspaper or on our website and via social media, we’ll need you to give us your permission to collect their data (name, email address etc) and to share their personal story and photographs.

Once your child reaches the age of 16, we will seek their consent for any future data processing.

7.2 Photographs, pictures, stories and competitions in our publications

We want children and young people (under the age of 16) to join in our fundraising and challenge activities and offer opportunities for young supporters to share their photos, stories and pictures. If we publish your child’s picture, photo or story, we’ll usually include their first name and age with it. If they write a blog for us, we might also include their surname alongside it.

7.3. Marketing and fundraising

We won’t use young people’s personal data for marketing purposes, and we won’t profile it. If a young supporter turns 16 and wishes to support The National Brain Appeal as an adult, some of the personal data we hold about that individual (e.g. youth fundraising activity) will be carried over to their supporter profile.


We use a variety of physical and technical measures to keep your data safe and to prevent unauthorised access to or use or disclosure of your personal information.

Electronic data and databases are stored on secure computer systems and we control who has access to information (using both physical and electronic means). Our staff receive annual data protection training and we have a set of detailed data protection procedures which personnel are required to follow when handling personal data.

8.1. Payment security

If you use your credit or debit card to donate to us, buy something or pay online or over the phone, we will ensure that this is done securely and in accordance with the Payment Card Industry Data Security Standard.  Find out more information about PCI DSS standards by visiting their website at pcisecuritystandards.org.

All electronic forms that request financial data will use the Secure Sockets Layer (SSL) protocol to encrypt the data between your browser and our servers.

If you use a credit card to donate or purchase something via our website your payment will be securely processed by our payment provider (WorldPay).

8.2. Where we store information

The National Brain Appeal’s operations are based in the UK and we store our data within the European Union.

8.3. How long we store information

The National Brain Appeal will store and use personal information for varying periods of time depending on your relationship with us. For example, if you make a donation to our work, we’ll keep your financial information for up to seven years after your last interaction with us.

We keep some data indefinitely (for example, your name and giving history). It’s important for us to retain this information as the majority of our legacy income comes from people we weren’t aware were leaving us a gift in their Will. Sometimes this legacy is left decades after the supporter’s last interaction with the charity. Knowing that the individual was a supporter in the past is important for us (particularly in case that a Will is contested). 

In these cases, we’ll only retain data that is necessary for these purposes, and we will delete or anonymise other parts of the record.

If you decide you no longer wish to hear from us, we’ll need to keep a note of that on our suppression list indefinitely.


We want to ensure you remain in control of your personal data. Part of this is making sure you understand your legal rights, which are as follows:

You have the right to:

  • request a copy of the information we hold about you – you will need to do this in writing – and we will respond within 21 days once we have confirmed your identity
  • update or amend the information we hold about you if it is wrong
  • change your communication preferences at any time
  • ask us to remove any sensitive personal data from your record
  • object to the processing of your information for marketing purposes
  • raise a concern or complaint about the way in which your information is being used.

If you would like further information on your rights or wish to exercise them, please write to us at The National Brain Appeal, 3rd Floor, Ormond House, 26-27 Boswell Street, London WC1N 3JZ.


If you are unhappy or have concerns about how your data has been used, please do get in touch immediately. You can email info@nationalbrainappeal.org or phone 020 3448 4724. We will respond within five working days and try to resolve your concerns.

If you are not happy with our response, you can make a formal complaint to The National Brain Appeal by contacting our office using the details set out above.

If you are not happy with our response, or you believe that your data protection or privacy rights have been infringed, you can complain to the UK Information Commissioner’s Office which regulates and enforces data protection law in the UK. Details of how to do this can be found at ico.org.uk.

This Privacy Policy was last updated on 18 February 2020.