An extension to our donor retirement age
Previously, potential stem cell donors stayed on our register until their 60th birthday. But as of September 2019, donor details will remain on the Anthony Nolan register for an additional year, until shortly before the age of 61.
Research and product development
We started processing donor data to identify potential donors for research purposes and the development of Cell and Gene Therapies.
Inspiring financial support
We have provided potential financial supporters of Anthony Nolan with information on how we may research and process their data to encourage support for our life-saving work.
We couldn’t do any of our lifesaving work without supporters like you. Whether it’s joining the register, being a donor for research and product development in cell and gene therapies or generously giving financial donations, getting behind our campaigns, volunteering your time, or being bold advocates of our work - your support means everything. The information you provide helps us to carry out our lifesaving work and allows us to let you know about the difference you’re making.
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:
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.
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:
We collect information in the following ways:
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.
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:
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
Managing and improving our relationships with supporters
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 firstname.lastname@example.org;
Responding to any queries or issues
Conducting training and reviews of our service
Meeting our legal obligations
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 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. 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.
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:
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 data about you with organisations engaged in related research activities to help improve transplant outcomes for our patients, but, as this information is anonymised, 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 email@example.com). 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.
The information you provide will be retained by us in accordance with applicable laws. We will take reasonable steps to destroy or de-identify personal information we hold if it’s no longer needed in connection with the purpose(s) for which it was collected and/or processed.
However, if you do choose to share your information with us publicly (for example, photos or footage on social media), then it’s possible that other people may have copied this information during the time that it was live, and therefore use of it is beyond our control.
We’d also like to note that, if you decide to sign up to the Anthony Nolan stem cell register, you will stay on the register until you are 61 years old, unless you decide to close your record on the register before that time. You can request copies of your personal information that we hold at any time (see What your rights are section below).
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 seperate Cookies Policy.
We want to make sure you're in control of how we use and keep your information.
You have the right to:
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
Or you can find out more on the Information Commissioner's Office website at https://ico.org.uk/for-the-public/
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.
Updating this policy
*’Us’, ‘we’ or ‘our’ refers to the registered charity Anthony Nolan (no. 803716 in England and Wales/ no. SC038827 in Scotland) and a company limited by guarantee (company no. 02379280) and Anthony Nolan Trading Limited, a limited company (company no. 02511952).
The Royal Free Hospital, Pond Street, Hampstead, London, NW3 2QG
2-3 Heathgate Place, 75-87 Agincourt Road, Hampstead, London NW3 2NU
**We are registered with the UK Information Commissioner’s Office (ICO) as a data controller under registration number Z3022117 (Anthony Nolan) and Z4877402 (Anthony Nolan Trading Limited).