Data Privacy Policy

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.

Table of Contents


What type of information do we have?

If you become a member

If you join us as a member, we currently collect and process of the following information about you, but only if you choose to share it with us:

  • 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
  • Histology report
  • Genetic analysis
  • Additional diagnostic information

If you register your interest

If you only register your interest, we currently collect and process the following information:

  • Name
  • Email address
  • Reason for subscribing
  • Company/organisation

And the following information, only if you choose to share it:

  • Date of birth
  • Gender
  • First half of postcode
  • Cancer type
  • Date of diagnosis


How we get the information and why we have it

The personal information we process is provided to us directly by you through the forms on our website or through your membership portal for one of the following reasons:

  • To contact you
  • To enable us to monitor use of the service
  • To know with which type of rare cancer you have been diagnosed and when that diagnosis was made
  • To enable us to improve our services

Under the Data Protection Act 2018, the lawful basis 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


What we do with the information we have

We use the information that you have given us in order to speed up discovery of diagnostics and treatments and other related research for rarer forms of cancer by:

  • Contacting you about our services
  • Assess the effectiveness of our marketing and communications
  • Monitor the types of cancer our members have so that we can target our communications to grow membership in particular cancer communities
  • Decide what to contact you about


How we store your information

Your information is securely stored on servers in the EU. We will keep your personal data indefinitely unless you ask us to delete it from our database.


Who we share your information with

We do not share your personal data with any third party. If this ever changes, we will seek your permission first and let you know who might have access to it. We will never share your personal data with any third party without your consent.


Your data protection rights

Under data protection law, you have rights including:

  • Your right of access – You have the right to ask us whether or not we are using or storing your personal information as well as asking us for copies of your personal information.
  • Your right to rectification – You have the right to ask us to rectify 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 ask us to restrict the processing of your 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 information you gave us to another organisation, or to you, in certain circumstances.


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

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.


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.


Changes to our privacy policy

RareCan Ltd keeps its privacy policy under regular review and places any updates on this web page. This privacy policy was last updated on 26th February 2021.


Our contact details

Data Protection Officer: Andy Hall

RareCan Ltd
8 Park Avenue
United Kingdom
NE46 3EN



How to complain

You can 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