Better futures for young lives with epilepsy and associated conditions
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Privacy Notice

Privacy Notice

Young Epilepsy may keep the following information about you:-

  • Name and contact details (as provided by you)
  • Your date of birth (as provided by you)
  • Records of any contact you may have had with our staff team.
  • Survey response (if you complete a survey and provide your contact details).

This information will be kept on our fundraising database. 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

Young Epilepsy will not share your information with any third parties and it will not be processed overseas. It will also not be used for automated decision making or profiling.

We will only contact you about things in which you have expressed an interest. If you no longer want us to keep in touch, you can unsubscribe or update your details and/or preferences at any time on our website at Alternatively, please call 01342 832 243 or email Please note: this may take 30 days to have effect.

Young Epilepsy will keep this information about you for 24 months after your last contact with us, this is in accordance with the Fundraising Regulator's recommendation and best practice. At that time we will again contact you to ask whether you still wish to be contacted by us, if we do not receive a response we shall assume you do not and remove your information from our databases. If you have donated money or bought merchandise, our Finance department will keep your information for 6 years from the end of the last company financial year they relate to, in accordance with government HMRC requirements.

Please note that Young Epilepsy uses data processors. A data processor is an organisation that processes personal data on our behalf. It does so under our instruction. Our contract ensures that the standards of Young Epilepsy, the Data Protection Act 2018 and the GDPR are upheld at all times.

An example of a data processor is a company that provides software (often online) that allows us to manage our relationships with supporters, including the handling of our donations and payments for sale of goods. We use similar cloud-based software, such as Dotmailer to support our marketing and communication activities, where we manage your consent in line with GDPR. To use this software we have to upload limited donor and supporter information. If you wish to know who our current data processors are, please email our Data Protection Officer (

If you need any further Fundraising information please use the 'Contact us' form on our website -

Young Epilepsy is registered with the Information Commissioner's Office under our legal name of the National Centre for Young People with Epilepsy Z5611618. Young Epilepsy tries to meet the highest standards when collecting and using personal information and applies relevant data protection legislation, such as the Data Protection Act 2018 and the General Data Protection Regulation, (applicable from May 2018).

Under the Data Protection Act 2018 and the General Data Protection Regulation you have the right to: access your information; rectify inaccurate or incomplete data; request the erasure of your information; restrict how your data is processed; and to object to the use of your information.  Should you wish to exercise any of these rights or wish to discuss any concerns or queries please contact the Data Protection Officer either through the main switchboard on 01342 832243 or by emailing Please note that should you be unhappy about the way we implement data protection you have the right to lodge a complaint with the Information Commissioner's Office


Privacy notice amendments

We may update this privacy notice from time-to-time by posting a new version on our website. You should occasionally check this page to ensure you are happy with the changes.

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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