Privacy Policy

Eyes on the Future (“we”, “our”, “us”) is committed to keeping your personal information safe and meeting our responsibilities under privacy law. Given that this is information that can be used to identify you, we want you to be confident that we are using it responsibly.

This Privacy Notice gives you detailed information on why and when we collect your personal information when you use our websites (including www.eyesonthefuture.org.uk) and other services, how we use your personal information, how we keep it secure, and how you can let us know if you would like us to change how we manage it.

  1. Who we are
  2. What personal information we may hold about you
  3. How we use your data
  4. Our lawful bases
  5. Retaining your personal information
  6. How we share your personal information
  7. International data transfers
  8. How we keep your personal information safe
  9. Your rights
  10. Other websites
  11. Cookies
  12. Updates to this Notice
  13. Contact us

1. Who we are

Eyes on the Future is a registered charity, with registration number 1198330, whose registered office is at 10 Queen Street Place, London, EC4R 1BE. We are a community who care for people affected by Inherited Retinal Dystrophies (IRDs), specifically those affected RDH12 IRD.  

If you have questions regarding your personal information or its use, please contact us using the details set out in the ‘Contact us’ section below.

2. What personal information we may hold about you

Personal information is any information that relates to an individual. It does not include information where the identity of the individual has been fully and effectively removed (anonymous data).

We collect the following personal information about you:

  • Identification information, such as your name;
  • Contact information, such as your email address, telephone number and home address;
  • Financial information, such as payment card details and billing address;
  • Medical information, including details of how RDH12 affects you and/or your family;
  • Any other information that you provide as part of your participation in our support group or Community Registry.

If you contact us, for example to provide your feedback, we may keep a record of that feedback and correspondence, as well as your name and contact details.

When you access our website, we also collect information about your computer, including, where available, your IP address, operating system, network location, browser type and the type of connection you are using. We do this for system administration purposes, including to analyse trends and gather broad demographic information for aggregate use so that we can improve the site, and deliver customized, personalized content.

Sensitive Personal information

Under data protection legislation, certain personal information is considered more ‘sensitive’ (e.g., information relating to race, religion, political affiliation and health). This is also known as ‘special category data’. If you sign up to be part of our support group and Community Registry, we will collect certain health data about you, in particular in relation to details about how RDH12 affects you and your family.    

Where we obtain your personal information

We collect and retain personal information about you that you have given us in different ways, for example where you:

  • Make a donation;
  • Use our website;
  • Subscribe to our newsletter;
  • Choose to be part of our email support group;
  • Choose to register in our RDH12 Community Registry;
  • Engage with us via social media platforms;
  • Contact us via email, phone, in person or by post.

We may collect personal information about you from third parties, including:

  • where you have told a third party you are happy to share your data; or
  • from publicly available and privately subscribed sources as part of our fundraising process. This may include obtaining information from individuals working on our behalf and from organisations that represent business development opportunities for potential partners.‍

3. How we use your data

We may use your personal information for the following purposes:

  • Enable you to make use of our services, including our support group and Community Registry;
  • Facilitate any transactions you wish to make with us, including donations;
  • Send you our newsletter or other updates and information about Eyes on the Future and our events, or other services that we think might be of interest to you;
  • Keep you informed about progress in research relating to RDH12;
  • Contact you regarding fundraising events;
  • Where you have consented for us to do so, share your personal data with trusted third parties so that they can contact you with details of programs, trials or other opportunities that may be of interest to you;
  • Anonymise and aggregate information so that it can be used by our trusted academic and industry partners for research into RDH12;
  • Learn from your experience and feedback to develop our work;
  • Keep our database accurate, relevant and up to date.

We will not sell your information to third parties. We may share your personal information with third parties in some circumstances, as detailed more fully in Section 6 below.

4. Our lawful bases

We will only use personal information when the law allows us to (i.e., where we have a ‘lawful basis’). Most commonly, we will use your personal information in the following circumstances:

  • Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests. For example, we have a legitimate interest in providing our services to you;
  • Where it is necessary for the performance of a contract with you;
  • Where it is necessary to comply with a legal obligation on us (for example, reporting to HM Revenue and Customs, Companies House or the Charity Commission).

In some circumstances, we may ask for your consent to use your personal information for a specific purpose. In particular, we may obtain your consent (i) in order to process your health information when you sign up to be part of our support group or Community Registry, (ii) to share your personal data with a third party that may wish to contact you with details of a program or clinical trial that may be of interest to you;  or (iii) before we send you any email marketing, blogs, newsletters or other communications about topics and events which we think might interest you.

You may unsubscribe from our email communications by following the instructions in any email that we send you, or you can withdraw your consent and request us to remove your personal information at any time by emailing us at [email protected].

We do not carry out any automated decision-making using personal information which produces legal effects or otherwise significantly affects individuals.

5. Retaining your personal information

We will not keep personal information for longer than necessary, and the appropriate retention period will vary according to the intended purpose for which we collected the personal information.

The criteria we use to determine the retention period of personal information are: (i) the respective statutory retention period; (ii) our contractual and/or business relationships with you; (iii) (potential) disputes; and (iv) any guidelines issued by relevant regulators. After expiration of that period, the relevant information is routinely deleted, as long as it is no longer necessary for the fulfillment of a contract, the initiation of a contract or to protect or defend our position or that of a third party. If you have any questions about our retention periods, please contact us at [email protected].

6. How we share your personal information

We may share aggregated insights about our patient community – i.e., the individuals in our support group and Community Registry – with our trusted academic and industry partners studying inherited retinal degenerative diseases, so that they can better understand the impact of RDH12 on people’s lives and how it might be treated. For example, we may provide information to our partners about patient distribution by country, age, and other broad demographics. As noted, we will share this data in an aggregated format, i.e. in a way that has been anonymised so that it does not contain your personal data and cannot be used to identify you.

Where we hold your consent to do so, we may share your contact details with certain organisations who approach us so that they can contact our community with details of, for example, a new disease program or clinical trial. Where we hold your consent and feel it is appropriate and/or potentially beneficial to you and/or our community as a whole, we may share your personal data with one or more of these organisations so that they can contact you with this information. As noted, we will never share your personal data in these circumstances without first obtaining your consent, and you are entirely free not to provide that consent if you aren’t comfortable with us sharing your personal data. You can also withdraw your consent at any time. 

We may also share your personal information with the following third parties:

  • with contractors, suppliers, or other third parties that provide services on our behalf (such as website host providers or providers that send our newsletters on our behalf);
  • as part of a sale, merger or acquisition, or other transfer of all or part of our assets including as part of a bankruptcy proceeding;
  • pursuant to a subpoena, court order, or other legal process or as otherwise required or requested by law, regulation, or government authority programs, or to protect our rights or the rights or safety of third parties;
  • with our professional advisors, lawyers, accountants and auditors; or
  • with your consent or as otherwise disclosed at the time of data collection or sharing.

7. International data transfers

We may transfer personal information we hold to a country outside the UK, for example if our service providers are located in another jurisdiction. If we do so, we will take steps to ensure that your personal information is protected in accordance with appropriate safeguards, especially where the recipient country is not considered to be adequate under UK law. In particular, we will rely on the appropriate safeguards under data protection legislation, such as standard contractual clauses (or equivalent) approved by the UK Government to protect your personal information.

8. How we keep your personal information safe

To protect your privacy we will make sure your personal information is kept securely and disclosed only to relevant organisations or representatives who need to access it to perform their roles. While we seek to use appropriate organisational, technical and administrative measures to protect personal information within our organisation, unfortunately no data transmission or storage system can be guaranteed to be 100% secure. If you have reason to believe that your interaction with us is no longer secure, please immediately notify us in accordance with the “Contact us” section below.

9. Your rights

Under certain privacy laws, you have rights relating to your personal information. You may have a right to the following:

  • to request access to the personal information we hold about you;
  • to request that we rectify or erase your personal information;
  • to request that we restrict the processing of your personal information;
  • to object to our processing of your personal information in certain circumstances;
  • under certain circumstances, to ask us to port personal information about you that you have provided to us to you or to a third party; and
  • where we previously obtained your consent, to withdraw consent to processing your personal information.

To exercise these rights, contact us via the “Contact us” section below. Please be aware that we may be unable to provide these rights to you under certain circumstances, for example if we are legally prevented from doing so or can rely on exemptions.

Additionally, you have the right to lodge a complaint against us, which you can do by contacting the supervisory authority in your country of residence.  In the UK, this is the Information Commissioner’s Office at www.ico.org.uk/make-a-complaint.

10. Other websites

Our website and other services may contain links to other websites. Please note that when you click on one of these links, you are entering another website for which we have no responsibility (even if you access the website via a link to one of our websites). We encourage you to read the privacy notices on all such websites.

11. Cookies

Our websites use cookies to enhance your experience while using those sites. Cookies are pieces of information that some websites transfer to the computer or device that is browsing that website and are used for record-keeping purposes at many websites. You can see further details about our use of cookies in our Cookies Policy here

12. Updates

This Notice may change from time to time – for example, to take into account of changes at Eyes on the Future or to reflect changes in regulation or legislation. It was last updated on October, 19th, 2022.

Updates to this Notice will be posted on this page – please check back from time to time. We will also use reasonable efforts to inform you of any significant changes by email where appropriate.

13. Contact us

If you have any questions or concerns about this Privacy Notice or the way in which we handle your personal information, please email us at [email protected].

You can also contact us at the following address:

Eyes on the Future
10 Queen Street Place
London EC4R 1BE
United Kingdom

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