Supporting the

Neuroendocrine Cancer Community

Privacy Policy


This privacy policy sets out how the Neuroendocrine Cancer UK (formerly NET patient Foundation), hereafter referred to as NCUK, uses and protects any information that you give us. We are committed to respecting your privacy and will take all reasonable steps to process your data in accordance with current UK law. The purpose of the privacy policy is to inform you about what information we collect, how we use the information, whether the information is disclosed and the ways in which we protect users’ privacy.

If you have any queries about this policy please contact Neuroendocrine Cancer UK, Holly House, 74 Upper Holly walk, Leamington Spa, Warwickshire CV32 4JL or email

NCUK may change this policy from time to time by updating this page. You should check this page at regular intervals to ensure that you are happy with any changes made.
This policy is effective from 29th June 2020.

What information do we collect about you?
NCUK will only collect personal data that is relevant to the carrying out of the legitimate purposes and function of NCUK. We will only hold information you personally consent to provide.

Information held by NCUK may include:

  • Name and, where relevant, job title
  • Contact information including address, postcode, telephone/mobile number and email
  • Preferences – that is, preferred mode of contact (by phone, letter or email), home, work or other address/contact details
  • Type of contact – someone diagnosed and living with a Neuroendocrine Cancer, family member / friend of someone diagnosed and living with a Neuroendocrine Cancer, healthcare professional, charity, institution, business / company, or other
  • Where relevant to your enquiry – clinical information including diagnosis, treatment, care provider, concerns, type of advice sought (and provided)
  • Subscription to and / or interest in – newsletter, e-bulletin and notification regarding our services (Fundraising, Events, Natter Group Meetings, Surveys, Clinical Information Updates, Research, Volunteering, Advocacy)
  • Resources utilised – for example phoneline query and / or information sent to you (handbook, factsheet, wallet cards, fundraising packs, banners), and / or any other resources we have provided
  • Resources provided – for example donations pledged / given, time volunteered, and/ or other resources / services you have provided
    any other information you have legally consented to provide.

What we do with the information we gather?
We will only collect (and hold) information relevant to the carrying out of the legitimate purposes and function of NCUK.
Our primary purpose is to support and inform patients, and their friends/ families, from diagnosis, through treatment and / or surveillance, to living with malignant Neuroendocrine Cancers – that is, lifelong support.

We utilise data to enable us to understand your informational and support needs – this allows us to develop, maintain and focus our services and for audit /internal record keeping.

We will hold your information for as long as is required to continue to provide you with the services you need / request or until you ask us to delete it (in its entirety or select part) / withdraw consent / unsubscribe.

We will not sell, distribute or lease your personal information to any third party without your explicit, written, permission or are required by law to do so.

From time to time, we are approached for market research purposes – we do not endorse any product or service the company may provide. We will not release any information about you without your explicit consent to do so. If your consent is given, we will only provide your stated / preferred contact details – the company should then seek further consent, from you, for any further information required – please note that we are not responsible for their conduct or for any information you may or may not provide / receive from them.

Controlling your personal information
You may choose to restrict the collection or use of your personal information in the following ways:

  • Whenever you are asked to fill in a form in person or on the website, you will be advised to read and agree to our privacy policy, before being asked for your consent, before being able to proceed. We operate an “Opt-In” policy – this means that you will be asked to indicate your consent by either ticking a box or signing your agreement. If you do not indicate or provide us with your consent , your information will not be processed and you may be removed from any mailing list or service.
  • If you have previously agreed to us using your personal information for direct marketing purposes, you can change your mind at any time by writing to NCUK, at Holly House, 74 Upper Holly walk, Leamington Spa, Warwickshire CV32 4JL or emailing us at and clearly marking the subject box ‘unsubscribe’ or click the unsubscribe button on any mailing list.
    Please note that if you click unsubscribe you will be removed from all mailing lists.
  • If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible, at the above address. We will promptly correct any information found to be incorrect.
  • You may request details of personal information which we hold about you under current UK Data Protection law. If you would like a copy of the information held on you please write to NCUK, Holly House, 74 Upper Holly Walk, Leamington Spa, Warwickshire CV32 4JL . You will be notified if a fee is required to process your request.

If you use standard email to communicate with NCUK, including email links and email forms on this website, this will not be secure and you should be aware that we cannot guarantee that it remains confidential. In order to prevent unauthorised access or disclosure we have made every effort to safeguard and secure the information when received at NCUK.

Cookies are small files of information which save and retrieve information about your visit to our site – for example, how you entered our site, how you navigated through the site, and what information was of interest to you. The cookies we use identify you merely as a number.

Cookies help us analyse web traffic to identify which pages are being used. This helps us improve our website in order to tailor it to customer needs. We only use this information for statistical analysis purposes.

Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.
You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer.

Links to other websites
Our website may contain links to enable you to easily visit other websites of interest or to make online donations. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.

If you call the helpline, you may choose to provide details of a personal nature. Only the helpline staff use your personal medical information and only for the purposes of dealing with your enquiry/enquiries.
Your personal information and details of the enquiries received are stored on a secure database. Your consent to processing this information will be sought at the time of the call.

Occasionally, we may need to consult with other healthcare professionals or service providers, including Neuroendocrine Cancer specialists, in order to fully answer your query. Your information will not be passed on to anyone else without your express permission.
If for any reason you wish to have your personal details removed from these records, please contact NCUK, Holly House, 74 Upper Holly Walk, Leamington Spa, Warwickshire CV32 4JL.

All helpline staff, whether permanent or temporary, will be aware of the legal requirements of the current Data Protection law – and will be compliant with their professional standards and code of conduct.

NCUK Data Controller:
Leanne Talbot.