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
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 publically available information. For example, we might use an external service to find your new address. We may also research information about you, either from publically 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:
We also monitor electronic communications and use of our Website but we do not collect cookies.
(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 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 do not consider that it will cause undue harm to your privacy.
We believe this because:
3. How we collect your information
Your personal information may be shared with us in the following ways:
4. How we share your information
We will not sell your details to any third parties.
Very rarely, and only in special circumstances, we may also 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 collect will be stored on our secure services which are hosted in the UK. By submitting your personal data, you agree to this storing.
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?
However, like most websites, ours collects the type of device you are using to access our website and the settings on that device may provide us with information about your device, including its type, what specific device you have, what operating system you use, the device settings, and why a crash may have happened. The operating system provider or the manufacturer of the device will have more details about what information your device makes available to us.
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 publically 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, 10 Huntingdon Street, London, N1 1BU. 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 firstname.lastname@example.org if you have any questions.
7. Changes to this policy
This policy is written in accordance with the Data Protection Act 1998 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, 10 Huntingdon Street, London, N1 1BU or email us at email@example.com .