RareCan Limited: Privacy Notice (members)

Last updated 27th April 2022

We store your data securely and safely, and use it in accordance with all relevant data protection laws. Our service was designed using ‘Privacy by Design’ principles and is fully compliant with the UK Data Protection Act 2018 (the UK version of the General Data Processing Regulations, GDPR).

Our Privacy Policy tells you, amongst other things, what personal data we collect about you, what we do with it, where we use it and for how long we keep it.

If we make changes to this notice, we will notify you by email. RareCan Limited will be what is known as the ‘Data Controller’ of personal data you provide to us.

Table of Contents

Who this Notice Applies to

This notice applies to our members ie. people affected by cancer who register their interest in taking part in research projects. A separate notice, here, applies to our business contacts (for example people who access our services).

Our Contact Details

Name: Andrew Hall (our data protection officer)
Address: 8 Park Avenue, Hexham, NE46 3EN
E-mail: dpo@rarecan.com

Data Types

The type of personal information we collect

If you become a member

We currently collect and process of the following information:

  • Name
  • Gender
  • Ethnicity
  • NHS number
  • Reason for registering
  • Phone number
  • Email address
  • The first half of your postcode
  • Cancer type
  • Cancer location
  • Cancer source
  • Date of diagnosis
  • Contact details of your GP and hospital consultant
  • Histology report
  • Genetic analysis
  • Additional diagnostic information
  • Additional clinical information (for example, treatment outcome)

Data Sources

How we get the personal information and why we have it

Most of the personal information we process is provided to us directly by you because you have expressed an interest in taking part in research projects related to your cancer.

We also receive personal information indirectly, with your consent, from  the hospital(s) where you have been diagnosed and treated.

We use the information that you have given us in order to:

  • Identify projects relevant to your cancer
  • Contact you about specific projects which may interest you
  • Contact you to update you on our progress
  • Monitor and improve our services

Data Sharing

Who we share your data with

We share identifiable personal data with NHS trusts to make requests for clinical data, including histology reports and details about your cancer diagnosis and treatment. With your explicit consent we may also contact NHS Trusts to convey your interest in taking part in specific clinical trials. Any data we share with researchers will be “pseudonymised” ie presented in such a way that the researcher will not be able to identify you directly, unless you have explicitly consented to us sharing your identifiable data with the research team.

Our lawful basis for processing your data

Under the General Data Protection Regulation (GDPR), the lawful bases we rely on for processing this information is your consent. You are able to remove your consent at any time. You can do this by contacting our data protection officer via mail at 8, Park Avenue, Hexham, NE46 3EN or via email at DPO@rarecan.com. You do not have to provide any reasons for your decision.

Data Storage

How we store your personal information

Your information is securely stored on servers in the EU. Limited information (your name and email address) may also be stored on secure servers in the US. We will keep your personal data indefinitely unless you ask us to delete it from our database. Please contact us at DPO@rarecan.com, 8 Park Avenue, Hexham, NE46 3EN if you wish to make a request to delete your information.

Data Rights

Your data protection rights

Under data protection law, you have rights including:

  • Your right of access – You have the right to ask us for copies of your personal information.
  • Your right to rectification – You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
  • Your right to erasure – You have the right to ask us to erase your personal information in certain circumstances.
  • Your right to restriction of processing – You have the right to object to the processing of your personal information in certain circumstances.
  • Your right to object to processing – You have the right to object to the processing of your personal data in certain circumstances.
  • Your right to data portability – You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.


You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.

Please contact us at DPO@rarecan.com, 8 Park Avenue, Hexham, NE46 3EN if you wish to make a request.


Cookies are text files placed on your computer to collect standard Internet log information and visitor behaviour information. When you visit our websites, we may collect information from you automatically through cookies or similar technology. For further information, visit allaboutcookies.org.

How do we use cookies?

RareCan Ltd uses cookies in a range of ways to improve your experience on our website, including:

  • Keeping you signed in
  • Understanding how you use our website

What types of cookies do we use?

There are a number of different types of cookies, however, our website uses:

  • Functionality – RareCan Ltd uses these cookies so that we recognize you on our website and remember your previously selected preferences. These could include what language you prefer and location you are in. A mix of first-party and third-party cookies are used.
  • Advertising – RareCan Ltd uses these cookies to collect information about your visit to our website, the content you viewed, the links you followed and information about your browser, device, and your IP address. RareCan Ltd sometimes shares some limited aspects of this data with third parties for advertising purposes. We may also share online data collected through cookies with our advertising partners. This means that when you visit another website, you may be shown advertising based on your browsing patterns on our website.

How to manage cookies

You can set your browser not to accept cookies, and the above website tells you how to remove cookies from your browser. However, in a few cases, some of our website features may not function as a result.

External Site Policies

Privacy policies of other websites

The RareCan Ltd website contains links to other websites. Our privacy policy applies only to our website, so if you click on a link to another website, you should read their privacy policy.


How to complain

If you have any concerns about our use of your personal information, you can make a complaint to us at DPO@rarecan.com, 8 Park Avenue, Hexham, NE46 3EN.

You can also complain to the ICO if you are unhappy with how we have used your data. The ICO’s address:

Information Commissioner’s Office
Wycliffe House
Water Lane

Helpline number: 0303 123 1113
ICO website: https://www.ico.org.uk