Privacy & Data Protection Policy

In order to build up our understanding of GIST, keep patients carers and medical professionals up to date with new information in relation to GIST/GIST Cancer UK (GCUK) and help administer our Patient meetings, it is helpful to keep a record of all who contact GCUK so that we have a way to make contact when there is relevant news that we would like to share with you in relation to GIST/GCUK.

The European GDPR (General Data Protection Regulations) apply to the storage and processing of personal data, and they contain provisions with which GCUK must legally comply. One of the GDPR regulations requires us to have explicit permission from each person who is registered with us to hold their personal data.

With your permission we will hold the information that you give to us on our database. At the very least we will need to hold a name and some means of contact (i.e. at least one of: telephone number, email address, postal address). We will also record brief details of a patient's GIST and mode of treatment, if you are willing to consent to this. We may use this information to alert you with any new developments in GIST treatment and clinical trials that may be relevant.

Under the provisions of the Data Protection Act we are obliged to let you see any data that we hold about you. If you wish to see this data, just give us a call or send an email. Please also let us know if any of your address details change.

You may withdraw consent at any time by contacting us at

Under no circumstances will GCUK share this data with any other organisation.

If you would like to register with GIST Cancer UK please complete the attached registration form