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Welcome to the National HIV Story Trust (“NHST“, “we” and “us“).

We are committed to respecting and protecting your privacy. This privacy notice sets out how we collect and use the personal data that you provide to us via this website, (our “site“), or through interacting with us. It also tells you about your privacy rights and how certain laws may apply to you.

Any defined terms and capitalised words in this Privacy Notice have the same meaning given in our Terms and Conditions.

If you have any queries about this notice or how we use your personal information, please contact us at [email protected].



  1. About us
  2. What personal data do we collect via the site?
  3. How we collect personal data
  4. How and why we use personal data
  5. Cookies
  6. Children
  7. How we share personal data
  8. International transfers
  9. Data security
  10. How long we keep personal data
  11. Third party links
  12. Your rights
  13. Changes to this notice or your data


  1. About us

This site is brought to you by the National HIV Story Trust. We are a charity registered with the Charity Commission for England and Wales under number 1185923.  Our registered office is at Cameo House Business Centre, Cameo House, 11 Bear Street, London, WC2H 7AS.

We are the data controller of, and responsible for, any personal data you provide to us, and we are registered with the UK Information Commissioner’s Office under number A8729003.

You can contact us about any queries you have regarding this privacy notice at either our postal address above, or at [email protected].

  1. What personal data do we collect?

‘Personal data’ means any data which can be associated with you as an individual, either directly or indirectly. We collect different information depending on how you use our site, interact with us and support us.

The personal data we may collect includes:

  • Identity and contact information, such as your name, address, email address and telephone details.
  • Transaction information, if you have supported us by making a donation.
  • Your story, if you have participated in our project. We will collect whatever information you share with us.
  • Usage data, which includes information about how you use our site. General, aggregated, demographic, and non-personal data (such as aggregated anonymous information about website usage) may be collected by us.
  • Technical data, such as the device you are using to access our site, your unique device ID, your internet protocol (IP), browser type and version, time zone, display settings, browser plug-in types and versions, operating system and platform and other technology on the devices you use to access our site.
  • Marketing and communications data, including our communications from and with you, and your preferences in receiving notifications, marketing and other communications from us.

We do not ask for ‘special categories’ of personal data on our website. ‘Special category’ data includes details about your race or ethnicity, religious or philosophical beliefs, sex life, sexual orientation, political opinions or trade union membership or health information.

However, the NHST’s aim is to film, record, preserve and share the history of those affected by the AIDS epidemic of the 80’s and 90’s. Our project is wholly diverse, but the LGBTQ+ community has been central to the story we are telling. Other people have been infected through blood transfusion or drug addiction. If you have told us your story, you may have told us about your health, your sex life and/or your sexual orientation. We only collect this information where you have consented to our doing so.

  1. How we collect personal data

Different personal data is collected in different ways.

  1. Personal data you provide to us

If you sign up to our mailing list, we collect your contact detail and marketing preferences.

We collect information that you provide when you contact us (whether by email, through our site, via social media or otherwise). We may also ask you for information if you report a problem with our site.

If you tell us your story, we will record your account of your experiences.

  1. Personal data we collect as you use our site

As you use our site, we will collect your technical, usage and transaction data as described above.

Some of this data is collected using cookies, beacons and similar technologies. Cookies are files with small amount of data which are sent to your browser (or device) from our Services and stored on your device. For more information, please see section 5 below (‘Cookies’).

  1. Personal data we obtain from third parties

We occasionally obtain person data (usually names and contact details) from our volunteers and project participants – usually if they are recommending other participants. We always ask that you do not give us other people’s information unless they have given you permission to do so.

  1. How and why we use personal data

We will only use your information where:

  1. We need the information to fulfil a contract with you

For example, if you correspond with us or ask a question, we will need to use your contact details to reply.

If you (or your organisation) provide us with a service we will use your contact information (and any associated billing or account information) for this purpose.

  1. We have a legitimate interest (reasonable purpose) in doing so

We will use your information for the NHST’s legitimate operational reasons where our doing so will not unduly affect your rights.

If you donate to us (via our site or otherwise), we will use your contact details and transaction information to manage and plan our fundraising efforts.

We will use your technical and usage information to:

  • Provide and make improvements to our site, and for system maintenance, support, reporting and hosting of data, and troubleshooting.
  • Ensure that content from our site is presented in the most effective manner for you and for your device.
  • Ensure that our site is secure.
  • Analyse how users interact with our site.

If you (or your organisation) has offered to provide us with a service, we may use your contact information for business development purposes.

We may also use any or all of the information above to administer and manage the NHST in general, to detect and prevent misuse of our site (including fraud and unauthorised payments), and to enforce our Terms or any other contract to which we may be a party. If you feel that your interests and fundamental rights outweigh our business purposes, and that we should therefore stop processing your data, please let us know.

  1. You have given us your consent

If you participate in our project and tell us your story, we will only collect what you are willing to share, and only ever with your consent. We appreciate that people’s experiences are deeply personal and can be very sensitive, so we make sure that all of our contributors are fully comfortable with our project’s aims and values, and have given their written consent, before participating.

If you have consented to sign up to our mailing list, we will use your contact details to keep in touch for marketing purposes.

  1. We need to comply with a legal or regulatory obligation

In certain circumstances, we may need to retain or use your personal data to comply with regulations and/or the law.

  1. Cookies

Cookies are small text files placed on your computer when you visit websites. Cookies are typically used to distinguish you from other users so that websites function more effectively, and they can also provide information to website owners.

Our site uses the following cookies:

Cookie name Purpose Provider Expiry Category
_cfduid Used by the content network, Cloudflare, to identify trusted web traffic NHST 29 days Strictly necessary
rc::a This cookie is used to distinguish between humans and bots. This is beneficial for our website, in order to make valid reports on the use of our website Persistent Strictly necessary
Rc::b This cookie is used to distinguish between humans and bots Session Strictly necessary
Rc::c This cookie is used to distinguish between humans and bots Session Strictly necessary
_ga Registers a unique ID that is used to generate statistical data on how the visitor uses our website NHST 2 years Analytics
_gat Used by Google Analytics to throttle request rate NHST 1 day Analytics
_gid Registers a unique ID that is used to generate statistical data on how the visitor uses our website NHST 1 day Analytics
NID Registers a unique ID that identifies a returning user’s device.  The ID is used for targeted ads 6-months Marketing
r/collect This cookie is used to send data to Google Analytics about the visitor’s device and behaviour.  It tracks the visitor across devices and marketing channels Session Marketing


Our cookie control panel enables you to change your cookie preferences on this site at any time.

You can also remove cookies from your computer through the settings on your browser, but be aware that this may impact your ability to make use of some features on our and other web sites.  Management of cookie settings varies from one browser to another.  The “Help” menu of your web browser will provide full instructions, and the following links may also be helpful:

The links below provide instructions on how to control Cookies in all mainstream browsers:

  • Google Chrome:
  • Microsoft Internet Explorer:
  • Microsoft Edge: (Please note that there are no specific instructions at this time, but Microsoft support will be able to assist)
  • Safari (macOS):
  • Safari (iOS):
  • Mozilla Firefox:
  • Android: (Please refer to your device’s documentation for manufacturers’ own browsers)

You can out of being tracked by Google Analytics across all websites by visiting

If you have any queries concerning your personal information or any questions on our use of the information we derive from the use of cookies on our websites, please contact us at [●].

  1. Children

Our site is not intended to be used by children. We do not knowingly collect any person data about children under the age of 18.

  1. How we share personal data

We will share your data with our trusted third party service providers. These include our information technology providers, such as website and mailing list hosts, and our professional advisors whom we retain for advice in respect of our operations. We will only disclose your data to third party service providers under terms of confidentiality, and they will only use your personal data for the purposes stated in this notice.

If you have told us your story, our aim is to preserve, share and amplify your voice. We make sure that this is clear to all of our contributors when we record their accounts. We will share our participants’ stories with:

  • The London Metropolitan Archive (“LMA”), which is the largest county record office in the UK. The LMA is open to the public, so once the archiving process is complete, your story will be accessible to researchers, historians, and anybody else who is interested.
  • Our website visitors. Some stories and accounts are shared on our website.
  • Our audiences. We are creating a feature film, and other productions, from the stories we have collected. We aim to share these with audiences, possibly via one or more streaming services. The exact details of this have not been finalised, but we will update this notice when we have further information.

On rare occasions, we may share personal data when we believe it is necessary to comply with the law, regulation or legal request (including a court order or government inquiry); to enforce or apply our terms of use or other agreements; in the context of a reorganisation or restructuring exercise; or to protect the rights, property, or safety of the NHST, our employees, our users, or others.

Our payment processing providers for online donations are Stripe, Apple Pay, and PayPal. If you support us by making a donation, you provide your payment information to the relevant payment processor direct, so we do not have access to it. You can see each of their respective privacy notices here: Amazon Smile, easy fundraising and PayPal.

  1. International transfers

Where we transfer personal data outside of the EU to a recipient in a third country in the absence of an adequacy decision by the European Commission, we take care to ensure that our data exports are compliant with data privacy law. We do this by relying on the Model Clauses and/or ensuring that the recipients of the data are certified under the EU-US Privacy Shield scheme. For further information, and/or to obtain copies of the relevant documents, please contact us at [email protected].

  1. Data security

The safety of your personal data is of paramount important to us, and we use various technical and organisational measures to ensure that your data is secure.

No transmission of information via the Internet or electronic storage is ever completely secure. Although we take appropriate measures to safeguard against unauthorised disclosures of information, we cannot guarantee the security of your data.

  1. How long we keep personal data

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.  If you contact us, we may keep a record of that correspondence.

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

To obtain further information about how long we retain your personal data, please contact us at [email protected].

  1. Third party links

Our site may contain links to third party sites whose information practices may be different than ours. Please consult all third party sites’ privacy notices, as we have no control over information that is submitted to, or collected by, third parties.

  1. Your rights

You have the right to:

  • require us to rectify the personal data we hold about you, where that data is incorrect;
  • require that we restrict the processing of your personal information in certain circumstances;
  • request access to the personal data that we hold about you;
  • require that, in certain circumstances, we delete the personal information we hold about you;
  • require that we provide you with the information that we hold about you in a structured, commonly used and machine-readable format; and/or
  • withdraw your consent (where we are relying on your consent to process the data, such as for marketing purposes).

You also have the right to lodge a complaint with the Information Commissioner’s Office, which is the UK supervisory authority for data protection issues ( We would, however, be grateful if you would contact us in the first instance so we can endeavour to deal with your concerns direct.

If you wish to exercise any of these rights, please contact us at [email protected].

To protect your privacy and security, we will take reasonable steps to help verify your identity before granting access or making corrections.

  1. Changes to this notice or your data

We may amend or modify this privacy notice from time to time. We will post any revised notice on this site, and if the changes are significant, we will notify you by email where appropriate.

It is important that the personal data we hold about you is accurate and current. Please keep us informed if your personal data changes.

This privacy notice was last updated on 28 September 2020.

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