Privacy Policy

First things first, we want to let you know what personal information we collect, and how we collect it when you help us in our work by joining the register, being a potential donor for research and product development in cell and gene therapies or raising funds. The main pieces of information we collect are:

• Name
• Postal address
• Email address
• Phone number

In some cases, where appropriate, we may also collect your date of birth, and some information about your interests and preferences to make sure we’re sending you the most relevant communications. If you sign up to the register, are a potential donor for research and product development in cell and gene therapies or donate cord blood, we’ll also collect some health information from you and from the samples you provide. You can read more about how we process your sensitive personal data (e.g. information about your health, ethnicity and tissue type) in the How we use and process your information section below.

Children’s information

We will always seek consent from a parent or guardian before collecting information about children. Some of the reasons we collect and manage information about children are for the purposes of running patient appeals, developing patient case studies, organising photo shoots, and judging entries related to children who have been nominated for an Anthony Nolan Supporter Award.  Every time we work with a child we seek the parent or guardian’s consent for the specific activity we are carrying out.

Our website is not intended for use by individuals under the age of 16 without the agreement and involvement of a parent or guardian.

There are a number of instances when we might collect information from you. These include when:

• you obtain, or let us know you’re interested in, an Anthony Nolan product or service (for example, registering for an event)
• you give us any information on our website, in writing, face-to-face, by chatting to us on social media or over the phone (including if your call is recorded)
• you register an interest in, or apply for, a job vacancy or volunteering opportunity
• you ask for information or assistance from us, or if you make a complaint
• you give us your details when you make a financial donation
• we are provided with information from a third party where we need to find more up to date contact information for you, or when we are conducting statistical analysis or research
• you use any other new and exciting features on our website that might sometimes require you to provide more information.

We collect information in the following ways:

• When you give it to us DIRECTLY

You may give us your information in order to sign up to the stem cell register, as a potential donor for research and product development in cell and gene therapies, for one of our events, to tell us your story, make a donation or communicate with us.  Sometimes when you support us, your information is collected by an organisation working for us (e.g. a professional fundraising agency), but we are responsible for your data at all times.

• When you give it to us INDIRECTLY

Your information may be shared with us by independent event organisers, for example the London Marathon or fundraising sites like Just Giving or Virgin Money Giving.  These independent third parties will only do so when you have indicated that you wish to support Anthony Nolan and with your consent. You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

• When you give permission to OTHER ORGANISATIONS to share or it is publicly available

We may combine information you provide to us with information available from external sources in order to gain a better understanding of our supporters to improve our fundraising methods, products and services.

This information comes from the following sources:

Social Media
Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp or Twitter, you might give us permission to access information from those accounts or services.

Information which is publicly available
This may include information from public sources such as: Companies House; the Charity Commission; newspapers and online media; company or charity websites and accounts.

We’ve been signing people up to our stem cell register for over 40 years, and we go to great lengths to keep all your information safe. We invest in the appropriate resources to protect your personal information from loss, misuse, unauthorised access, modification or disclosure. We make sure we manage it in accordance with our legal responsibilities under applicable data protection laws. However, no internet-based site, including email, is 100% secure, so we cannot be held responsible for unauthorised or unintended access that is beyond our control.

After we have received your information, there are a variety of ways in which we might use it to ensure we give you the best possible service. They include:

Providing services and processing information internally

• Entering and managing your details if you choose to join the Anthony Nolan register or as a potential donor for research and product development in cell and gene therapies
• Contacting you (or tracing you through your GP, other medical practitioner, data tracing service or alternate contact) if you come up as a potential match;
• Providing the product or service you wish to use, or any information about it;
• Confirming, updating and improving our records to make sure we have the correct information, or if we require additional information in relation to you being a potential stem cell donor or a potential donor for research and product development in cell and gene therapies (by contacting you or by using a carefully selected external company);
• Processing sales transactions, donations, or other payments and verifying financial transactions;
• Troubleshooting and fixing problems with the website, including instances when we want to improve your user experience.  

Managing and improving our relationships with supporters

• Informing you of any new products or services, news about Anthony Nolan and other ways you can help us with our lifesaving work. We will use your data in order to tailor and improve our communications so that they are relevant to you;
• Contacting you about any Anthony Nolan fundraising events you have signed up to, so we can give you information and support;
• Ensuring our communications are timely and relevant, so you’re only receiving the information you want. We will analyse data from our database so that we can better understand our supporters. For example, we use third parties such as CACI to create supporter categories within our database based on postcodes and we will include this information with the rest of the personal data we hold on you. We will also use broad demographic information such as statistics and analysis from third parties to better understand how our own supporter base compares to the general population. This helps us to decide who to send our communications to and is useful to ensure the communications you receive are relevant to you.

This activity assists us in understanding the background of the people who support us and helps us to make appropriate requests to supporters who may have the means and the want to give more. You can opt out of your data being used in this way by contacting us on 0303 303 0303 or emailing support@anthonynolan.org;

• Asking you about supporting our lifesaving work through a fundraising request, provided we have the legal basis for doing so;
• Inviting you to get involved with voluntary surveys, campaigns or research (either internally or by another company) to find out more about the demographics, interests and behaviours of our supporters;
• Where you have agreed to receive email or SMS marketing communications from us, we may provide your email address or mobile phone number in an encrypted format to social media companies, such as Facebook, Instagram, Twitter or YouTube, or to digital advertising networks that are providing services to us by displaying our advertising to you on those social media platforms and other websites, as well as identifying audiences with interests similar to yours. You can opt out of your data being used to display advertising to you by contacting us on 0303 303 0303 or emailing mailto:support@anthonynolan.org. However, this will not prevent our advertisements being shown to you on a randomised basis or based on cookie data and may mean that you stop receiving marketing communications from us more generally.

Responding to any queries or issues

• Responding to any queries or complaints that you raise.

Conducting training and reviews of our service

• Enhancing or reviewing the service we provide to you, and meeting training needs;
• Conducting statistical analysis and research using, where possible, anonymised data.

Meeting our legal obligations

• Using information for auditing purposes;
• If we have a legal obligation to use or disclose information about you for instance, where we are ordered by a court or regulatory authority or we are legally required to hold donor transaction details for Gift Aid or accounting/tax purposes.

Other

• When we consider you for potential job or volunteering opportunities where you complete an application;
• Transferring information to any entity which may acquire the rights in us (for example, as the result of a merger);
• For any other purpose to which you agree.

Legitimate Interests

In certain instances, we may collect and use personal information where this is necessary for our own (or a third party’s) legitimate interest such as:

• processing in relation to your status as a potential stem cell donor on the register or as a potential donor for research and product development in cell and gene therapies, including email, social media and postal communications with you (see How We Will Communicate With You section below);
• sending direct marketing material to you by post or contacting you by telephone for fundraising purposes (subject to checking against any existing marketing preferences);
• conducting research to better understand who our supporters are and better target our fundraising activity;
• conducting scientific research to improve Anthony Nolan’s transplant activities, including advancing the understanding of blood cancer, stem cell transplants and educating healthcare professionals and the general public, as well as promoting research into the causes, prevention and cure of blood cancer, and publishing the results of such research on an anonymous basis;
• monitoring who we deal with to protect our charity against fraud, money laundering and other risks;
• maintaining and administering our register, supporter database and systems;
• processing in relation to keeping the transplant community informed, including e-mail newsletters;
• conducting research to identify potential new supporters of our life-saving work.

In all cases, we balance our legitimate interests against your rights as an individual and make sure we only use personal information in a way or for a purpose that you would reasonably expect in accordance with this Privacy Policy and that does not intrude on your privacy or previously expressed marketing preferences.

Processing your sensitive personal data

We process some of the sensitive personal data you might provide, (e.g. information about your health, ethnicity and tissue type) where you have given your consent to do so, as set out on applicable forms, or where you have made that information manifestly public or where there are public interest reasons in the area of public health, archiving purposes or scientific research purposes. This information helps us match potential stem cell donors (and cord units) to patients who may have the same or similar profiles. In order to find donor matches for patients outside the UK, we will share your data (in a pseudonymised form) with international registries and transplant centres, which may be located outside of the EEA.  We use predictive statistical techniques (using your data, including personal sensitive data) to decide how to communicate with you in relation to your status as a potential stem cell donor. Where we process your sensitive personal data for scientific research purposes, we will implement appropriate safeguarding measures such as pseudonymising or anonymising information (where applicable).

Sensitive personal data may be relevant to providing an effective relationship with major supporters, or shared with us by supporters. In such cases we will use this data in a sensitive and appropriate way.

We want you to know that we will never sell or pass on your personal information to third parties for their own marketing purposes. There may be some third parties that we need to share personal information with in order to help us provide services and products to you and to run our website, including the following:

• Related Anthony Nolan entities**, if you ask us to do so, so we can manage our supporter relationships, administer our business and let you know about Anthony Nolan news, products and services which might be of interest to you;
• Any entities who may, or do, acquire any rights in us in a merger, acquisition or reorganisation;
• Our advisors, in order to help us better manage, support or develop our organisation and comply with legal and regulatory obligations;
• Any service providers who need to know certain information in order to provide you (or us) with a product or service – such as sending out your donor welcome pack if you join the register;
• Our partners including, for example, event organisers we work with;
• Law enforcement bodies and/or regulatory entities, in order to comply with any legal obligation or court order.

We use external companies to collect or process personal data on our behalf. However, we always carry out comprehensive checks on these companies before we work with them and put a contract in place to set out our requirements, especially in relation to how they manage the personal data they collect or have access to.

Some of our suppliers run their operations outside the European Economic Area (“EEA”) where different privacy laws apply, which may include lower security requirements and fewer rights for individuals.  Where your personal information is transferred, stored and/or otherwise processed outside the EEA, we will take all reasonable steps to ensure that there are appropriate safeguards in place to protect your personal information (such as entering into standard contractual clauses).

We may share anonymised or pseudonymised data about you with organisations engaged in related research activities to help improve transplant outcomes for our patients, but, as this information is anonymised or pseudonymised, these organisations will be unable to identify the information as relating to you. 

Potential Stem Cell Donor Communications

You can always opt out of receiving the marketing and fundraising communications (see below), but we will always contact you in relation to your status as a potential stem cell donor and your status as a potential donor for research and product development in cell and gene therapies. Once on the register, you will stay on it until your 61st birthday (unless you ask to be removed before that date by contacting us on 0303 303 0303 or emailing support@anthonynolan.org). Our experience managing the register informs us that we need to periodically connect with you, to ensure that you’re available and ready to save a life. We need to make sure we can get in touch with you if you are ever found to be a match for a patient; otherwise, we can’t save as many people. We use email, social media and, if necessary, post to encourage you to engage with us, to keep your contact details and medical status up-to-date.

Marketing and Fundraising Communications

Separate to potential stem cell donor communications, we will contact you so we can update you on news about the stem cell register, information about campaigns to get involved with, ways to financially support our lifesaving work, stories from patients, and other news we think you’d be interested in. It is always your choice as to whether you want to receive information about our work, how we raise funds and the ways you can get involved.

You can update your communication preference or unsubscribe from these communications at any time (including telling us that you don’t want us to contact you for marketing purposes by telephone, or by post) by clicking the link provided in every message we send you or by contacting us (see Contacting Us section below). We will not use your personal information for marketing purposes if you have indicated that you do not wish to be contacted by us for such purposes. However, we will retain your details on a suppression list to help ensure that we do not continue to contact you.

Unless you choose to hear more from us, our communications with potential stem cell donors tend to be quarterly at the most. We may contact stem cell donors with information related to your status on the register, facts about stem cell donation and to ask you to update your details so that you can stay active on the register.    We won’t send you appeals or fundraising requests as part of the above communications - unless you’ve told us separately that you want them.

We will never pass on your information to other companies or charities for their own marketing purposes. We may use third party data tracing services and publicly available sources in order to make sure your information is up to date so we can keep in touch.

This website contains links to other websites that we believe may be of interest to you. This Privacy Policy only applies to our website, so if you link to another website, we recommend you read the privacy policy of that website before sharing any personal or financial data.

Like most websites, we use ‘cookies’ to help us improve how we create, and how you use, our site. Cookies mean that a website will remember you and can obtain an overall view of visitor habits and volumes to our website. They can make interacting with a website faster and easier, for example filling in your name and address in text fields. To view more information on what cookies we use and how we use them please click here  to review our separate Cookies Policy.  

We want to make sure you’re in control of how we use and keep your information.

You have the right to:

• be told how your personal information will be used;
• request a copy of the information we hold about you;
• update or amend the information we hold about you if it is wrong;
• change your communication preferences at any time;
• ask us to restrict the processing of your personal information if there is a disagreement about its accuracy or legitimate use;
• ask us to remove your personal information from our records;
• request an electronic copy of your personal information be sent to you, or another organisation;
• object to the processing of your information for marketing purposes on the basis of a legitimate interest or for statistical purposes;
• ask us for human intervention or to challenge any such decision where we take automated decisions in relation to your personal information; or
• raise a concern or complaint about the way in which your information is being used.

For further information about your rights, refer to our ’Your Rights Under GDPR’ guide. To request a copy of the information we hold about you, please contact the Data Protection Team at:

Data Protection Team
2-3 Heathgate Place,
75-87 Agincourt Road,
London NW3 2NU

Email: dataprotection@anthonynolan.org

Or you can find out more on the Information Commissioner’s Office website at https://ico.org.uk/for-the-public/

Questions

If you have any questions about this Privacy Policy, anything you’d like to correct or if you’d like to request a copy of the information we hold about you, you can contact The Data Protection Officer at the ‘Head Office’ address below, or email dataprotection@anthonynolan.org

Complaints

If you have any concerns or complaints as to how we have handled your personal information, please don’t hesitate to get in touch (you can find the details above) and we will endeavour to investigate. You may also lodge a complaint with the UK’s data protection regulator, the ICO, who can be contacted at: www.ico.org.uk/global/contact-us/ or by writing to the Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

EU Representative

To comply with the General Data protection Regulation (2016/679) we have appointed a European representative. If you wish to contact them, their details are as follows:

Bird & Bird GDPR Representative Services SRL
Avenue Louise 235
1050 Bruxelles
Belgium
EUrepresentative.AnthonyNolan@twobirds.com

Updating this policy

This Privacy Policy was updated in December 2020. We will keep it under review and make updates from time to time. If we make any significant changes to the way we treat your personal information, we will make this clear on the Anthony Nolan website or by contacting you directly.