Privacy Policy


Cure EB (formerly known as Sohana Research Fund) is committed to protecting and respecting your privacy.

Whenever you share personal data with us we aim to be clear with you and not to do anything that you would not reasonably expect us to do. We will always endeavour to tell you when we are collecting data from you and in this document we describe what we will and will not do with your personal information.

We have set this out in seven sections:

  1. The type of personal information we collect
  2. How we use your information
  3. How we collect your information
  4. How we share your information
  5. How we keep your data safe and who has access to it
  6. Accessing and updating of your information
  7. Changes to this Policy

Please note that this Privacy Policy applies to all Cure EB’s activities and our website, (the ‘Website’).

1. The type of personal information we collect

We receive personal information about you in a number of ways:

(a) Personal information you provide to us

We receive personal information from you when you ask about our activities, order products from us (such as publications and email newsletters), make a donation to us, fundraise on our behalf, or otherwise give us personal information.
The type of personal information we collect will therefore depend on the reason why you are engaging with us. It may include information such as your name, date of birth, email address, postal address, telephone number and credit/debit card details.

(b) Personal information provided to us by third parties

Sometimes, we receive personal information about you when you engage with other organisations. Details of information about this is set out in the section ‘How we collect your information’. When this happens we will treat the information in the same way as if you had shared it directly with us.

(c) Extra personal information we generate – analysis of your personal information

From time to time we may keep your records up-to-date and add information to them by checking against external publicly available information. For example, we might use an external service to find your new address. We may also research information about you, either from publicly available information or from information that we have already collected from you. We do this so we can operate efficiently and to ensure you receive information that is relevant to you and the purposes for which you have shared your personal information.

2. How we use your information

We will use your personal information primarily to:

  • Administer any donation from you or support your fundraising efforts, including the claim of Gift Aid on your donations (as requested by HMRC).
  • Record your involvement with us.
  • Let you know about changes to our services or policies.
  • Provide any information you have requested from us.
  • Manage your preferences for hearing from us.
  • Investigate and respond to complaints, legal claims or other issues.
  • Detect and reduce fraud and credit.

We may send you communications about our work and how you can help us, for example, information about our fundraising activities, volunteering and research progress. In this case:

  • We will use the basis of ‘legitimate interest’ to send communications by post to those who have previously donated, expressed interest in our work or whose public organization or persona is aligned with the interests of the charity
  • We will not send to those who have opted out of such communications
  • We will only send electronic communications to those who have opted in to such
  • We will always offer an easy route to withdraw consent on any communications we send.

To change your preferences at any time, you can email us at [email protected] or write to us at Cure EB, 175-185 Grays Inn Road, London WC1X 8UE.

We also monitor electronic communications and use of our Website.

(a) Building profiles

We may also analyse the information we collect about you so that in certain cases we can build a profile and better understand you and target our communications to you appropriately, and with the most relevant information. For example, we may wish to send you invitations to attend special events or to discuss specific fundraising projects. Where we use such profiles it enables us to cost-effectively and efficiently raise funds to support our work.

When building a profile we may analyse geographic, demographic and other information relating to you.   In doing this, we may use additional publicly available information about you, for example public addresses and listed Directorships.

(b) Why we build profiles

We believe our collection and use of your personal information is necessary and in the charity’s best interests so that we engage with you in the most effective way, using our resources efficiently, and so that we may raise donations to support the medical research projects funded by Cure EB (formerly known as Sohana Research Fund). In doing so, we consider that it will not cause undue harm to your privacy. We believe this because:

  • the personal information about you has either been provided by you, generated by your engagement with Cure EB or is personal information that is publicly available from legitimate sources;
  • we have made you aware of how we use your personal information and that we undertake this level of research at the point you first provided your personal information to us;
  • we directed you to the further detail contained in this Privacy Policy should you wish to learn more about how we use your personal information;
  • you will expect us to know information about your interests, preferences and the level of potential support you might provide to Cure EB – in order that we make best use of your time and efforts in engaging with us;
  • we aim to ensure you are informed that we have collected and used your personal information in this way and that you have access to a copy of the Privacy Policy at our first point of contact, in our first meeting, or otherwise in our first correspondence with you following our meeting.

3. How we collect your information

Your personal information may be shared with us in the following ways:

(a) Direct collection:

  • you may give us your information when you sign up for one of our events, make a donation or communicate with us;

(b) Indirect collection:

  • your information may be shared with us by fundraising sites like JustGiving or Raisely (our website donation provider) or by event organisers such as the London Marathon. These independent third parties will only do this when you have specified that you wish to support Cure EB and with your clear consent. You should check their privacy policy when you provide your information to understand how they will process your data;
  • your information may be shared with us via referrals from trustees, volunteers or staff members;
    your personal details may be available from public sources of personal information. Please see the sections above for more detail;
  • your information may be shared with us from other online accounts. Depending on your settings or the privacy policies for other online services like Facebook or Twitter, you might give us permission to access information from those accounts. The information we get from those online services depends on your personal settings, and therefore it is recommended that you check them regularly.

4. How we share your information

We will not sell your details to any third parties.

We may add your data to third party platforms with whom we have engaged for specific purposes, for instance our email marketing provider (currently Mailchimp), a mailing house or a payment provider such as Stripe or PayPal. In these instances Cure EB remains the Data Controller, with the third party acting as a Data Processor only.

Very rarely, and only in special circumstances, we may share information with our financial and legal advisers for the purposes of obtaining advice and protecting our legal rights.

5. How we keep your data safe and who has access

Cure EB is responsible for collecting your personal information. We use rigorous procedures and strict security features when we collect your personal information in order to prevent unauthorised access. However, no data transmission over the Internet is 100% secure and although we try to protect your personal information, Cure EB cannot guarantee the security of any information you transmit to us and you do so at your own risk.

We have appropriate technical controls in place to protect your personal details (for example our online forms are always encrypted and our network is protected and routinely monitored).Regular reviews are carried out to establish who has access to information that we hold. This ensures that your information is only accessible by appropriately trained staff, volunteers and contractors.

We may, in some limited circumstances, have an obligation to disclose your details to the police, regulatory bodies or legal advisors.

We will only ever share your data in other circumstances if we have your explicit and informed consent.

Where we store your personal data

Information which we directly collect will be stored on our secure services which are hosted in the UK. By submitting your personal data, you agree to this storing.

External Links

The Cure EB website may include links to other sites, not owned or managed by us. We cannot be held responsible for the privacy of information collected by websites not managed by us.

What information do we collect from our website?

We use third-party cookies for analytics only, in order to make sure our website functions properly and effectively. These collect non-identifiable data such as information on the device and operating system used to access the website  Your operating system provider or the manufacturer of your device will have more details about what information your device makes available to us.

As with most websites our site logs IP addresses of visitors for analytics and security reasons. This data is used to protect the site and to analyse website usage and is not linked to any other personal data we hold.

Aged 16 or under

If you are aged 16 or under, you must get your parent/guardian’s permission before you provide any personal information on our Website.

6. Accessing and updating your personal information

We will use publicly available information to update your details wherever possible. However, it is a great help to us if you are able to let us know if your details have changed.

You can request access to any information we hold about you by contacting us at Cure EB, 175-185 Grays Inn Road, London WC1X 8UE. If there are any discrepancies in the information we provide, please let us know and we will correct them.

If you wish to access your information, please send a description of the information you want and also send proof of your identity by post to the address above. Please note that we do not accept these requests by e-mail, but you can e-mail us at [email protected] if you have any questions.

7. Changes to this policy

This policy is written in accordance with the Data Protection Act 2018, the General Data Protection Regulation (GDPR) and the Privacy and Electronic Communications (EC Directive) Regulations (PECR) 2003, and describes how Cure EB collects and uses personal information given directly or indirectly by people who engage with us and or visit our Website.

Cure EB (formerly known as Sohana Research Fund) is registered under the Act as a Data Controller under number ZA129393. If you have any questions about the policy, please contact our Data Protection Officer at Cure EB, 175-185 Grays Inn Road, London WC1X 8UE or email us at [email protected].

We may change this Privacy Policy from time to time so please check back periodically. If we were to make significant changes to the policy, we will highlight this clearly on the Website or we will contact you directly.

Policy last updated 09.11.2023