Privacy

This policy explains how CCLG: The Children and Young People's Cancer Association (CCLG) manages your personal data, why we collect data and your rights about any of your personal data that we hold.

CCLG is committed to being transparent and responsible about how we handle any personal data we collect from you.

All personal data we collect is managed according to the UK General Data Protection Regulation (UKGDPR) and the Data Protection Act 2018.

CCLG is registered with the Information Commissioner’s Office as a data controller. Our registration number is ZA750227.

If you have any questions, please contact us at CCLG: The Children and Young People's Cancer Association, 24 De Montfort Street, Leicester LE1 7GB, email info@cclg.org.uk, or telephone 0333 050 7654.

Our lawful basis for processing personal data

We use the following lawful bases for collecting personal data:

Based on specific consent

For some activities, for example sending marketing communications, we require specific consent to perform them. We also ask for specific consent when asking for childhood cancer stories or case studies, as they are likely to contain information about health (a special category of personal data).

When necessary for the performance of a contract

If you enter into a contract for us for a product or service, for example, by purchasing an item from the CCLG shop, requesting research funds or working for CCLG, we will process the personal data required to enter into and fulfil that contract.

When we have a legal obligation

As a charity we have numerous regulatory and legal obligations which we must fulfil. This may mean processing personal data and sharing it with regulatory bodies, for example the Charity Commission or the Fundraising Regulator, or complying with requests from the police.

When necessary to protect vital interests

It may be necessary to collect and share certain personal information in order to protect the lives and health of our staff, volunteers or people fundraising for us, for example, to enable us to respond to a health or safeguarding emergency at an event, or to ascertain suitability for a fundraiser to undertake an activity which may pose a risk to their health.

When it is in our legitimate interests

There may be times when we determine that we have a legitimate interest to process certain personal information. We will only do so when we’ve determined that it does not override your rights or freedoms.

How we collect your personal information

When you give it to us directly

We may collect your information when you provide it to us directly. This could include, but is not limited to:

  • Signing up to take part in a fundraising event
  • Making a donation to us
  • Contacting us directly to ask about our activities
  • Submitting a personal story to our website
  • Ordering a product from our online shop
  • Seeking assistance or professional advice from us (e.g. by ‘asking an expert’ through our website)
  • Applying to join CCLG as a professional member

When a third party provides it to us

Your data may be shared with us by a third party provider, e.g. when you sign up to support CCLG through a third party events company like TCS London Marathon, or when you use a third-party fundraising platform like JustGiving. You should always check the privacy policies of third party services to understand what they will do with your data.

Your personal data may be shared with us by a family member or a friend who contacts us on your behalf or by a fundraiser who passes on your details to us.

We may occasionally use a third-party organisation like a professional fundraising company or a data processing company to collect and process your information. Where they are doing it purely on behalf of CCLG, we will be responsible for your information at all times.

From cookies and analytics software

Cookies are small text files placed on your computer when you visit websites. Cookies may help to track your behaviour, for example Google Analytics cookies. They may also be necessary for some website features to function properly, for example checkout processes.

You can configure your browser to block websites from accepting cookies and to delete any existing cookies that have already been downloaded. However, please note that blocking cookies may stop some features of our website from working correctly.

Please note: Cookies cannot be used to run code or programs, or to deliver viruses to your computer.

Find out more about cookies and how they work: https://ico.org.uk/for-the-public/online/cookies/

From social media

We may collect data that you have made publicly available on social media, for example if you tag us in a post or send us a direct message. Depending on your social media settings, you might give us permission to access information from those accounts or services.

From public or other external sources

We may combine information that we already have about you with information available publicly or through external sources. for example, socio-demographic and lifestyle information or information about previous donations you have made, in order to gain a better understanding of you and to improve our fundraising methods, products and services.

We may also obtain information about you where it is publicly available and found in places such as Companies House, Land Registry website or on social media and information that is published in articles and newspapers.

As a charity, we may take reasonable and appropriate steps to find out more information about our supporters, particularly where significant sums are being donated. We may conduct research, including accessing information which is already publicly available, on prospective donors, partners or volunteers to ensure that donations are from appropriate sources and do not pose an ethical or organisational risk to CCLG or to the children and families we support.

What personal information we collect

Personal data is defined as data that can be used to identify a living person. We will only ask for personal data when we require it in order to fulfil a service on your behalf (e.g. to register you for an event or process a donation). Personal data that we collect may include:

  • Name
  • Contact information (e.g. home address, email address, telephone number)
  • Date of birth
  • Gender
  • Payment information, e.g. credit/debit card details if you make a donation
  • Tax status, for the purposes of processing Gift Aid donations
  • Any other personal information that you may voluntarily provide us, e.g. as part of a survey

Under data protection law there are also special categories of personal data, which includes racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, genetic data, biometric data (where used for identification purposes), physical and mental health, or a person’s sex life or sexual orientation.

We will only ever collect special categories of personal data when we need to for very specific purposes, and with your consent. For example:

  • When you sign up to certain challenge events, we may ask for health information to ensure your safety or suitability for taking part in the event; sometimes third-party event organisers may require that we provide this information as part of the booking process.
  • You might provide information about health conditions or other special categories of personal data when you share a personal story or case study with us.
  • We may ask for some special categories of personal data like ethnic origin for monitoring or reporting purposes; this would always be voluntary.

How we use your personal information

CCLG is a charity, a research funder and a professional membership organisation for childhood cancer professionals. We perform a huge range of tasks and process personal data for lots of difference purposes. This could include:

  • Providing services, products, support or information that you have signed up to receive
  • Responding to queries or complaints
  • Processing donations, including Gift Aid
  • Supporting fundraisers
  • Keeping a record of our supporters’ relationships with us, and other internal administrative tasks, for example, accounting
  • Safely managing fundraising events
  • Creating and managing accounts for members on our website, membership CRM and CCLG Connect discussion forum
  • Processing and administrating applications for funding
  • Recruiting and safeguarding staff and volunteers
  • Producing anonymised results of surveys
  • Statistical analysis and research to monitor and report on the success of various activities
  • Monitoring performance of our fundraising activities and creating reports
  • Monitoring the performance of our websites
  • Improving the quality of our services

CCLG will keep in touch with you by email or post for marketing purposes where you have agreed for us to do so. If you give consent (or ‘opt in’) for us to send you marketing updates by email, you will have the opportunity to unsubscribe if you change your mind by following the link at the bottom of those emails, or by emailing info@cclg.org.uk to let us know.

When you sign up to take part in an event with us, we will usually send confirmation emails and follow-up emails specifically about that event. You will continue to receive these even if you opt out of marketing emails.

If an event is run through a third-party organiser, you may also receive emails from them; you may need to opt-out of their marketing emails separately.

Who we share your information with

We will never sell or rent your information

We may share your information with third party organisations who are authorised to operate on our behalf. This could include:

  • Organisations we work with to organise fundraising events, for example, TCS London Marathon
  • The fundraising platforms we use, for example, JustGiving
  • Payment processors, for example, PayPal or GoCardless
  • Regulatory bodies, where we have a requirement to do so
  • Financial advisors or bodies, for the purposes of fraud reduction
  • Emergency services, for example, if there is an immediate risk of serious harm or abuse
  • Law enforcement or legal advisors, if there is a legal requirement to do so or if we are protecting our legal rights

Additional information for CCLG members

We will request information which we require to administrate your membership. We will use the information you provide to send you relevant communications and provide access to the members area of our website(s). Your information is stored on a secure database.

If you opt for SIOP-Europe membership, we will share your information with SIOP-Europe so that they may administer your membership. For more information about how SIOP-Europe uses your data, please visit their website.

Some of the information you provide us with will be published to the membership directory in the password-protected member area of our website(s). We therefore recommend you supply work contact details rather than personal ones. If you do not wish for your information to be published in the directory, please contact us.

Additional information for research grant applicants and grant holders

Personal data provided as part of a research grant application may be shared with CCLG affiliates, experts and advisors, some of whom may be based outside of the UK, including:

  • Host institutions and other institutions
  • External peer reviewers, experts and other appointees
  • Government and regulatory authorities
  • Higher education funding councils
  • Other research organisations
  • Other funding bodies
  • CCLG donors or other potential donors

This information could be shared for the purposes of:

  • Administrating and evaluating the application and, if the application is successful, the grant
  • Funding successful applications
  • Monitoring the performance of the grant and grant activities
  • Carrying out audits and evaluations
  • Knowledge-sharing, training and general business process reviews

CCLG may publish the name, work address and contact details, including the email address of the lead applicant(s) or grantholder(s) and others funded by CCLG and the title and an abstract of the Grant on its website, annual report, promotional material and publications from time to time. CCLG may also disclose this information to prospective and actual collaborators for the purposes of promoting research collaboration. 

CCLG and any other funder contributing to the grant may contact all grantholders, research personnel, host institutions and other Institutions from time to time via post, telephone or email in connection with the administration of the grant.

Your rights

Under the UK GDPR, you have rights in relation to the collection and processing of your personal data:

  1. The right to be informed: the right to know what we are doing with your personal data and why.
  2. The right of access: the right to see exactly what information we hold on you.
  3. The right to rectification: the right to tell us to correct personal data promptly.
  4. The right to erasure: the right to ask us to erase any and all data that we hold on you.
  5. The right to restrict processing: the right to tell us not to perform a particular process on personal data.
  6. The right to data portability: the right to have your data provided in a machine-readable format that other organisations can easily access, e.g. a CSV file.
  7. The right to object: the right to object to processing even where we have a legitimate lawful basis, based on your specific situation.
  8. Rights in relation to automated decision making and profiling: rights around where we can or cannot use automated systems to process data.

Accessing and updating your personal information

You can request access to any information we hold about you by contacting our Data Protection Officer at Children’s Cancer and Leukaemia Group, 24 De Montfort Street, Leicester LE1 7GB. Equally, please let us know of any changes to your personal information.

You can also let us know if you would no longer like to receive communications from us or if you would prefer us not to profile you for the purposes of targeting or tailoring our fundraising efforts, by emailing info@cclg.org.uk, calling us on 03330507654 or writing to our Data Protection Officer at the address above.

Changes to this policy

We may change our privacy policy from time to time so please check back periodically.

This privacy policy was last updated January 2025.