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Privacy Policy

At the Cystic Fibrosis Trust, we are committed to protecting your personal information and being transparent about what we do with it. We will use your personal information in accordance with all applicable laws concerning the protection of personal information and not to do anything with your information you wouldn’t reasonably expect.

This Privacy Policy covers: 

  • Who are we
  • What the Cystic Fibrosis Trust’s privacy policy does
  • How we get your personal information
  • What information we collect
  • How we use your information
  • How we will communicate with you
  • What 'consent' and 'preferences' are
  • Who we share your information with
  • Children - anyone under the age of 16
  • Social media
  • Information & support services
  • Your rights
  • Cookies

Who are we?

In this policy references to the Cystic Fibrosis Trust, or Trust, or to ‘we’ or ‘us’ are to the Cystic Fibrosis Trust which is a registered charity in England and Wales 1079049, and in Scotland SC040196. 

The Cystic Fibrosis Trust is what’s known as the ‘controller’ of the personal data you provide to us. We will usually collect basic personal data about you like your name, postal address, telephone number, email address and your bank details, if you are giving us a donation for example. 

Sometimes we will collect other information about you such as your date of birth, gender, or your relationship to cystic fibrosis. We will always be very clear with you about the reasons why we may wish to collect such information, and we will only do so with your specific consent and permission. 

Data Processors

Sometimes we appoint third parties to take on tasks for us like managing the production of print materials for delivery, including CF Life magazine, as well as the storage and delivery of fundraising materials such as running shirts. These third parties are known as 'data processors'.  

Where we appoint a third party to process data, it will always be with a formal agreement in place between the Cystic Fibrosis Trust and that organisation, to protect the security of your data. See the full privacy policy for more on who we share your information with.

If you would like a list of third party processors you can request it by contacting:
Data Protection Officer
Cystic Fibrosis Trust
One Aldgate
Second Floor
London
EC3N 1RE
Email: dataprotectionofficer@cysticfibrosis.org.uk
Phone: 0203 795 2188

Regional Fundraising Volunteers

The Cystic Fibrosis Trust is supported by a network of fundraising volunteers, who carry out fundraising activity around the country on our behalf. These volunteers may collect personal data from members of the public who are involved with this fundraising activity. Because they are acting on our behalf, the Cystic Fibrosis Trust is the Data Controller for any personal data held by the volunteers, so the rest of this Privacy Policy also applies to that data.

What does the Trust’s privacy policy do?

Our privacy policy explains how we will use any data that you share with us. We are legally required to tell you how we will use this information and give you the opportunity to opt out of marketing communications (i.e. tell us not to use your information in that way). To make it easier to use and understand, our policy is set out as a series of frequently asked questions and answers that explain what information we gather, how we use it, where it goes and how you can find out more. If there’s anything you are unsure of, you can always contact our Supporter Care team on supportercare@cysticfibrosis.org.uk or 020 3795 2177 during regular office hours. 

We may change this document from time to time to reflect the latest view of what we do with your information. Please check back frequently; you will be able to see if changes have been made by the date it was last updated at the end of the document

Read our full privacy policy





Research

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

Discover more

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

Read on

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

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