Retina UK privacy notice

Retina UK (registered charity no. 1153851) exists to support people living with progressive sight loss caused by inherited retinal dystrophies (IRDs), and funds cutting edge research to ultimately make their challenges a thing of the past.

We respect the privacy of our service users, members and supporters, as well as visitors to our website. This notice explains how we collect, manage, use and protect your personal information.

How we protect your privacy

According to the law, we are accountable for the data we process. So we measure any risk we might create when we process your data, and we have appointed a member of staff who is responsible for data protection whom you can contact with any concerns. We keep records of our processing and any incidents so we can measure and improve our approach. We regularly review our policies and procedures to ensure we are upholding your rights.

The information we collect from you

Under the Data Protection, Privacy and Electronic Communications Regulation 2019 The charity is what’s known as a ‘controller’ of the personal information you provide to us. The information you provide will vary, but could include:

  • Your name, postal address, telephone number and email address
  • Information on your motivation for supporting the charity, if applicable
  • If you are making a financial contribution, your debit and credit card information, bank account details or other banking information in order to process your payment, as well as information required to validate your identity and prevent fraud
  • Information about your activity online when you visit our website and when we send you an email

Sometimes you may provide other information, which could include your date of birth, gender, details about your eye condition, genetic diagnosis and health. We will only collect and record sensitive information like this, which is known as ‘special category data’, with your explicit consent. Access to this data will be restricted to certain members of staff, and I will not be shared with any third party without your consent, unless we have a statutory obligation to do so, or if there are concerns for your safety.

How we collect your information

We collect your personal information in various ways, for example when you request a copy of our newsletter, apply for membership, register for an event, provide us with feedback, make a donation, enter a raffle or make a call to our helpline. We may also collect information when you are using our websites or apps. Sometimes, we will gather publicly available data to ensure that your information is up to date, build a profile based on your background and interests, and communicate more effectively with you. Remember that if you give us permission to share information about you publicly in the form of a case study, or on social media, or you share such information yourself, it is then in the public domain.

How we use your information

The information you provide is used to fulfil any requests or queries we receive from you, to process any donations you make, to manage your contact preferences, and to provide you with information about our work and activities, including updates about our services, medical research and fundraising activities. We may from time to time use your information to seek feedback from you or conduct surveys. Sometimes, we also have a legal obligation to process your personal information, for example when maintaining Gift Aid records.

Often we will process your information based on consent that you have provided to us. On other occasions, we will do so because we consider we have a legitimate interest to do so. Some examples of when we would rely on our legitimate interest include:

  • To pursue our organisational aims and objectives
  • To fundraise now and in the future for our important work
  • To ensure we meet our regulatory requirements as a charity
  • To manage our ongoing relationships with service users, members and supporters
  • When you work for us
  • When you volunteer your time for us
  • To manage financial transactions and prevent fraud
  • To clean our data and to ensure it remains up to date

Where we rely on legitimate interest to process your information, we will always ensure that we respect your rights, and that you have the opportunity to opt-out and inform us of your preferences.

How long we keep your information

We will not keep your personal information for any longer than is necessary for the charity’s purposes or for legal requirements. If we haven’t heard anything from you for ten years we will write to you to check whether you would still like to hear from us, and you can contact us at any time on 01280 821334 or to ask us to remove your information from our records.

Sharing your information

We only disclose information to third parties when obliged to by law, for purposes of national security, taxation and criminal investigations, and the following:

  • If you have agreed that we may do so
  • If we run an event or deliver a service with a partner organisation

We will never sell or rent your personal information to other organisations.

Your rights

You have a number of very important rights, which we will always respect:

  • The right to be informed – transparency over how we use your personal information
  • The right of access – you can request a copy of the information we hold about you, which you will receive within one month
  • The right of rectification – you can let us know if any of the information we hold about you is inaccurate, and we will correct it
  • The right to restrict processing – you can ask us to stop processing your information
  • The right to be forgotten – you can ask us to remove your information from our records
  • The right to object – you can let us know at any time if you want us to stop processing your information for marketing purposes (e.g. sending you event notifications, fundraising appeals etc)
  • The right to data portability – you can obtain and reuse your personal information for your own purposes
  • You also have the right not to be subjected to decision making based on automated processing.

Remember, you can contact us at any time to discuss your rights or update your preferences by calling 01280 821334 or emailing

How we protect your information

We maintain the highest standards of data privacy and security to protect your personal details. We regularly review our processes and procedures to ensure that your information is protected from unauthorised access or use, accidental loss and/or destruction, and we have a Technical and Organisational Measures Policy (TOM) which details our procedures.

Contacting us

We are always happy to hear from you if you would like to:

  • Discuss our approach to privacy and data protection in more detail
  • See a copy of our full GDPR Data Protection Policy
  • Learn more about your rights
  • Request a copy of the information we hold about you
  • Provide or withdraw consent
  • Tailor your communication preferences

If you would like to make a complaint about how we have handled your personal data please also get in touch with us. If you are not satisfied with our response you can contact the Fundraising Regulator: or the ICO:

Retina UK
PO Box 350
MK18 1GZ
Tel: 01280 821334