Privacy Policy

In accordance with the General Data Protection Regulation this privacy policy sets out how the Childhood Tumour Trust uses and protects any information that you give to the Childhood Tumour Trust.

The Childhood Tumour Trust needs to collect data as part of its day to day business but is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified, then you can be assured that it will only be used in accordance with this privacy statement.

The Childhood Tumour Trust will only collect the level of data needed in order that we can run the charity to support children and young people with neurofibromatosis type 1. This means we may need to collect varying amounts of data depending on what activities you are involved in with the charity.

What we collect

We may collect the following information:

Name and Telephone number.

Contact information, including email address

Demographic information such as postcode, preferences and interests

Other information relevant to organising events and campaigns run by the charity that you may be interested in hearing about, participating in and or attending.

What we do with the information we gather

We require this information to understand your needs and provide you with a better service, and in particular for the following reasons:

Internal record keeping.

We may use the information to improve our products and services.

We may periodically send promotional emails about days out, camps, competitions, new products, special offers or other information which we think you may find interesting using the email address which you have provided. You may unsubscribe at any time by contacting us and asking to be removed from the mailing list.

We will never sell your data onto third parties.

We will never use the information we hold on file to contact you for market research purposes. In the event of undertaking market research or collecting summary data to support our activities and campaigns, we will always ask you directly giving you the option to consent to participate.

We may contact you by email, phone, fax or mail with information about any research we think you may be interested in participating in. If we conduct any research or invite you into research studies being run by others this will always be through research advertisements with the study details, which you can then contact directly if you are interested. All research will be consented for independently of any data CTT collect.

We will maintain a basic database containing your name, address, email address and first names and ages of any children. Providing us with this information means we are able to contact you directly with any activities or offers that we feel you may be interested in, and also allows you to be entered into our occasional prize draws. If you do not wish to provide your information you will still be informed of public activities through our public Facebook page.

If you are participating in a specific activity run by the Childhood Tumour Trust charity then there may be a need to collect further data, including medical information, in these cases the data will be specific to the activity and will not appear in our general databases.

The Facebook Public, Twitter, Instagram and other social media

We will not directly collect information but necessarily by interacting with these programmes information is shared, you are recommended to consider the content you are sharing, e.g. likes and retweets and to refer to Facebook’s policies for more information and altering privacy settings.

The CTT information and support group on Facebook

The group is a closed group this means that no information is visible to those outside the group, however we cannot take responsibility for any information that others may choose to share beyond the group and you are recommended to consider the content that you are sharing, and to refer to Facebook’s policies for more information and altering privacy settings.


We are committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online.

We do not share your information with third parties, unless you have specifically consented to this in, for example, order to receive a prize or VIP event, we will never pass on your details without your express consent.

How we use cookies

A cookie is a small file which asks permission to be placed on your computer’s hard drive. Once you agree, the file is added and the cookie helps analyse web traffic or lets you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.

We use traffic log cookies to identify which pages are being used. This helps us analyse data about webpage traffic and improve our website in order to tailor it to customer needs. We only use this information for statistical analysis purposes and then the data is removed from the system.

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. This may prevent you from taking full advantage of the website.

Links to other websites

Our website may contain links to other websites of interest. 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.

Controlling your personal information.

If you have previously agreed to us holding your personal information for our database you may change your mind at any time by emailing us at [email protected].

We will not sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so.

You may request details of personal information which we hold about you.

If you believe that any information we are holding on you is incorrect or incomplete, please email us as soon as possible. We will promptly correct any information found to be incorrect.

Website disclaimer

The information contained in this website is for general information purposes only. The information is provided by the Childhood Tumour Trust and while we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the website or the information, products, services, or related graphics contained on the website for any purpose. Any reliance you place on such information is therefore strictly at your own risk.

In no event will we be liable for any loss or damage including without limitation, indirect or consequential loss or damage, or any loss or damage whatsoever arising from loss of data or profits arising out of, or in connection with, the use of this website.

Through this website, you are able to link to other websites which are not under the control of The Childhood Tumour Trust. We have no control over the nature, content and availability of those sites. The inclusion of any links does not necessarily imply a recommendation or endorse the views expressed within them.

Every effort is made to keep the website up and running smoothly. However, The Childhood Tumour Trust takes no responsibility for, and will not be liable for, the website being temporarily unavailable due to technical issues beyond our control.

This policy was last updated 17/5/2018