Our
privacy notice
Privacy notice: NEUROENDOCRINE CANCER UK
Who we are
“We” and “us” means Neuroendocrine Cancer UK (NCUK). We are a charity with registered charity no. 1092386.
Your privacy matters
At NCUK, we are committed to keeping your personal data safe and secure.
This notice sets out in detail the purposes for which we process information about you, who we share it with, what rights you have in relation to that information and everything else we think it’s important for you to know.
If you have any questions about the processing of your personal information, or you would like to exercise any of your rights, please reach out to us with the details mentioned below:
Email us: [email protected]
How we process your information
To understand how we process your personal information and to understand your rights, please visit the relevant appendix below:
Appendix 1: Community (patients, family, carers)
Appendix 2: Human resources (job applicants, employees, trustees, volunteers)
Appendix 3: Healthcare professionals, grant applicants
Appendix 4: Events, donations, fundraising and marketing
Appendix 5: General information (complaints procedure, your rights)
Changes to this privacy notice
We aim to keep this privacy notice regularly updated. This privacy notice is kept under regular review. If we make any significant changes to the way in which we process your information, we will let you know by either reaching out to you or posting a banner on the website.
This was last updated in November 2026.
Appendix 1: Community (patients, family, carers)
How and when do we collect information about you?
We collect personal information directly from you when you contact us through our helpline, website contact forms, or by email. We may also receive information if you engage with us through our social media pages or take part in fundraising or awareness activities. The personal information we collect typically includes your name, telephone number and email address, and may also include your postal address if you choose to provide it. This information is used to respond to your enquiries, provide information or support relating to neuroendocrine cancer, and keep an accurate record of our communications with you.
If you contact us for information or support about neuroendocrine cancer, we may also collect information about your health or the health of someone you care for, but only where it is relevant to your enquiry.
How is the information used?
We use this information to:
- Respond to your enquiries and provide information, guidance or emotional support through our helpline or other contact channels.
- Record and manage our communications with you, so our support team can follow up appropriately.
- Help us understand the needs and experiences of people affected by neuroendocrine cancer and improve our information and support services.
- Send you updates or newsletters about our work, if you have chosen to receive them.
- Manage and record participation in fundraising or awareness activities where relevant.
- Comply with our legal and regulatory obligations, including safeguarding and data protection requirements.
What is our lawful basis for processing this information?
- We process your information under our legitimate interests in providing support and information to people affected by neuroendocrine cancer. Where this involves special category data, such as health information, we rely on the substantial public interest condition under the Data Protection Act 2018 to ensure we can offer appropriate assistance and maintain service records.
- For any safeguarding information that we record, we rely on legitimate or vital interest, read with substantial public interest and conditions from the Data Protection Act 2018.
- For any case studies and photography that we circulate, we rely on legitimate interest, and for surveys we rely on your explicit consent (if they are not anonymous).
Who do we share your data with?
- We may share your personal information with our trusted partners such as Rareminds, which provides specialist emotional and psychological support to people affected by neuroendocrine cancer. This sharing only takes place with your explicit consent and solely for the purpose of arranging or providing mental health support. Rareminds is an independent organisation, and it is responsible for handling any information it receives in accordance with data protection law and its own privacy policy.
- Personal data is not shared with funders. Information shared with funders is shared only anonymously.
- To comply with our duty of care and safeguarding, we may need to pass some information raising safeguarding concern with the authorities. In such circumstances, we apply vital interest and legitimate interest as our lawful basis. Data subjects’ rights and other UK General Data Protection Regulation (GDPR) provisions may be restricted when concerning personal data processed in these circumstances. Exceptions and exemptions are applied on a case-by-case basis.
How do we store your information and for how long?
We retain the personal data of all service users for a period in line with our retention periods. If you would like to know more about this, please contact us at the email address above.
Appendix 2: Human resources (job applicants, employees, trustees, volunteers)
How and when do we collect information about you?
You provide several pieces of data to us directly during the recruitment period and subsequently upon the start of your employment/engagement. In some cases, we will collect data about you from third parties, such as employment agencies or former employers when gathering references.
What types of information is collected about you and who provides it?
We keep several categories of personal data to carry out effective and efficient processes. Specifically, depending on your type of engagement with us, we may process the following types of data:
- Personal details such as name, address, phone numbers, marital status
- Name and contact details of your next of kin
- Footage of the organisation events where you may appear
- Information of any disability or other medical information you have disclosed
- Right to work documentation, national insurance number, bank account details
- Information gathered via the recruitment process such as that included in a CV, cover letter or application form, references, details on your education and employment history etc
- Information relating to your employment with us (e.g. job title, job description, salary, terms and conditions of the contract, annual leave records, appraisal and performance indication, and formal and informal proceedings involving you, such as letters of concern, disciplinary proceedings and grievance proceedings)
- Your biography and picture for the website (if applicable).
We may also process special category data, which includes health information, sexual orientation, race and ethnic origin, but it would be anonymous. We may also process criminal records information if the role involves Disclosure and Barring Service (DBS) check.
How is the information used?
We are required to use your personal data for various legal and practical purposes for the administration of your contract of employment or your volunteer/ trustee agreement, without which we would be unable to employ you or engage with you. Holding your personal data enables us to meet various administrative tasks, legal obligations or contractual/agreement obligations. We process information in relation to the DBS for our safe recruitment practices.
What is our lawful basis for processing this information?
We mainly use ‘contractual obligation’ as a lawful basis for processing personal data for employees, job applicants and freelancers. We mainly use ‘legitimate interest’ for trustees and volunteers. We may also have legal obligation in order to process and share your data, for example we need to share salary information to HMRC or use some of your data to enrol a new employee on a pension scheme.
We may rely on our legitimate interest for processing activity such as keeping supervision and appraisal records; using your image, biography and videos/pictures of the organisations’ events where you may appear on our website or marketing/fundraising materials to promote the charity.
Some special categories of personal data, such as information about health or medical conditions, is processed in order to carry out employment law obligations and for health and social care obligations (such as those in relation to colleagues with disabilities and for health and safety purposes). We may also process other special categories of personal data, such as information about ethnic origin, sexual orientation, health, or religion or belief on the basis of substantial public interest for the purposes of equal opportunities monitoring.
When processing criminal records (e.g. in order to perform DBS check), the organisation relies on the lawful basis of legitimate interest and additional conditions of the UK GDPR and Data Protection Act 2018.
Who do we share your data with?
Personal data in relation to your salary is shared with HMRC as part of our legal obligation. Personal data may be shared with third parties for the following reasons:
- For the administration of payroll, pension, human resource functions (for example the online holiday booking system), administering other employee benefits.
- When sharing information with third parties, we have data sharing agreements, data processing agreements or contracts in place to ensure data is not compromised. These third parties implement appropriate technical and organisational measures to ensure the security of your data.
How long do we keep your data?
We only keep your data for as long as we need it for, which will be at least for the duration of your employment/engagement with an additional 6 years after your employment/engagement has ended. If you’ve applied for a vacancy but your application hasn’t been successful, we will keep your data only for 12 months.
Some data retention periods are set by the law. Retention periods can vary depending on why we need your data. Please get in touch by contacting us using the details above if you want to know more about the retention period.
Data is destroyed or deleted in a secure manner as soon as the retention date has passed.
Appendix 3: Healthcare professionals, grant applicants
Healthcare professionals
We collect basic professional and contact details from healthcare professionals, such as name, job title, organisation, email address and telephone number. This information is used to respond to professional enquiries or referrals, share relevant resources and updates, and support collaboration on the care and wellbeing of people affected by neuroendocrine cancer. We process this information under our legitimate interests in engaging with clinicians and professionals to advance awareness, education and support in the field of neuroendocrine cancer.
Research grant applicants
If you apply for a research grant with us, we will collect certain professional and project-related information from you such as your name, job title, employment institution, contact details, project title and summary, and any other information relevant to your application (e.g. budget, timeline, research team). We use this information to assess and administer your application, award funding, monitor progress, share outcomes and engage with you as a research partner. We process this information under our legitimate interests to advance research into neuroendocrine cancer.
Appendix 4: Events, donations, fundraising and marketing
Events
Your personal information is collected when you register for an event with us. We may collect basic personal information, such as your name, email and phone number. We rely on legitimate interest to administer your registration for the event. When we collect other information such as dietary information, we rely on your explicit consent.
If you have attended an event with us previously, we may reach out to you to invite you for our future events. We rely on consent (to send you emails) and legitimate interest (to call you on your registered number with us).
Donations
Your personal information is provided by you via a donation form on our website or via third party donation platforms (e.g. Just Giving, Enthuse). The information gathered may be name, email address, Gift Aid sign up, company name if donation made by an organisation, donation details, reasons to engage and postal address.
This information allows us to process your donation and deal with any potential enquiries. We rely on our legitimate interest to process this data. If you agree that we can claim Gift Aid on your donations we are legally required to keep a record of the claim and your Gift Aid declaration. If you are donating using a third party, please also refer to the privacy notice published on their websites.
Fundraising and marketing
We may reach out to you for fundraising if you have previously engaged with us in an event, made a donation, or if we believe that you may be interested in engaging with our organisation. We may also send you marketing communications if you have signed up for marketing emails. We use emails, WhatsApp communications and social media platforms for marketing.
We rely on your consent to send you email communications (except where this is a business email address, whereby we rely on legitimate interest).
If you would like to change your marketing preferences, please reach out to us on the email address provided in the first section of this privacy notice, or you can simply unsubscribe with the option on the bottom of the emails.
We may also use post as a mode of sending you marketing communications, relying on legitimate interest. If you would like us to not send such communications, please do reach out to us.
Appendix 5: General information (complaints procedure, your rights)
Your rights as a data subject
You have the following rights:
- ‘Right to be informed’, which means we will be completely clear and transparent about how we plan to use your personal information.
- ‘Right of access’, which means you can request details of the personal information we hold about you and how we use it. We will provide this within one month.
- ‘Right to rectification’, which means you can ask us to update or amend the personal information we hold about you, if it is incorrect.
- ‘Right to restrict processing’, which means you can ask us to change, restrict or stop the way we are using your personal information.
- ‘Right to erasure’ (or ‘right to be forgotten’), which means you can ask us to remove your personal information from our records.
- ‘Right to object’, which means you can object to us using your personal information for marketing purposes.
- ‘Right to data portability’, which means you can obtain the personal information we hold about you and reuse it for your own purposes.
- ‘Right not to be subject to automated decision making’, which means if we use systems to make a decision about you, you have the right to ask for a person to intervene, which may change the outcome.
- Right to lodge a complaint with a supervisory authority, such as the Fundraising Regulator or the Information Commissioner’s Office (ICO), if you are not satisfied with our response to a request you make to us, or you feel we are not using your information correctly.
International data transfers
Where personal data is stored outside of the UK and the European Economic Area, safeguards to protect personal data may include but are not limited to the UK Addendum used in conjunction with the EU Standard Contractual Clauses (SCCs) or UK International Data Transfer Agreement (IDTAs). Such safeguards will be subject to Transfer Risk Assessments (TRAs).
Complaints procedure
If you are unhappy with the way we process your data, please get in touch with our Data Protection Lead, or Director of Operations, on [email protected].
You can also make a complaint to the Information Commissioner’s Office (ICO), which regulates the use of information in the UK. They can be contacted at 0303 123 1113 or you can write to them at: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.