Privacy policy


The Cure CJD Campaign is a fund within UCLH Charity. UCLH Charity is the official charity (registered number 1165398) supporting University College London Hospitals (UCLH) NHS Foundation Trust. We aim to improve and enhance patient care at UCLH and we do that by supporting patients, staff, equipment and research.

The Cure CJD Campaign is the data controller for this website.

We understand the importance of protecting the privacy and security of your personal information and undertake to safeguard all personal data that we collect.

The following policy is written in accordance with the General Data Protection Regulation (GDPR) and it provides information on how The Cure CJD Campaign and UCLH Charity collects and uses personal information including those given by people who visit our website.

Under GDPR, we need to be able to specify and demonstrate on what lawful grounds we process your personal information such as:

a. Consent – where you have given us consent to process your information. For example, the supplying of your contact details on a completed form will be recognised as consent.

b. Legitimate interest – we may process your personal information for specific purposes which are within our legitimate interest and which enable us to support our cause or help us raise funds

If you have any queries or concerns that are not covered below in regards to how The Cure CJD Campaign uses your information please email us at su*****@cu*****.org or write to us at 5th Floor East, 250 Euston Road, London NW1 2PG.


This policy includes:

1. Why and what personal information we collect

2. How we collect your information

3. How we use 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


1. Why and what personal information we collect

The personal information we collect will depend on why you are engaging with us. This is to ensure our communications meet your requirements.

The type of data we collect is:

  • Personal details (name, email, postal address, etc.);
  • Financial information (e.g. payment information);
  • Any other information that you choose to share with us such as your hobbies, workplace, interests or health condition that you or a family member are affected by;
  • Information created by your involvement with The Cure CJD Campaign and UCLH Charity – for example, if you entered a raffle organised by the charity, received our newsletter or attended one of our events, we will collect the provided information on our database.

Other information can include your telephone number, date of birth, gender and financial information needed to process donations, online shop payment or event fees. We may also ask you if you are a UK taxpayer so that we can claim Gift Aid. We may ask if you or your family member has been a patient and whether there is a particular area of the hospital you are interested in.

We need to collect personal data on donors and potential donors. This is to enable us to identify individuals, corporates and foundations who may have the capacity and the propensity to give large donations to support our cause or to help raise funds through other means such as volunteer support and the facilitation of partnership opportunities.


2. How we collect your personal information

We collect personal information when you contact The Cure CJD Campaign, for example, through contact forms and donation forms on this website.

We may also collect personal data which relates to you from third parties. Your information may be shared with us by fundraising sites like JustGiving or Virgin Money. These independent third parties will only do this when you have specified that you wish to support UCLH Charity and The Cure CJD Campaign and with your clear consent. They have their own privacy policies and if you wish to know more you should contact them on how they will process your data.

We use third parties to collect data on our behalf to support our activities. This might include running raffles, event registrations and processing your donations, and ensuring our records are as up to date as possible through running address and detail verification checks.

Depending on your settings or the privacy policies for other online services like Facebook or Twitter/X, you might give us permission to access information from those accounts or services. The information we get from those online services depends on your personal settings, and therefore it is recommended that you check them regularly.

We may collect personal information from referrals, local and national public sources including Companies House, Charity Commission and the media. We ensure that information collected is neither intrusive nor excessive. We believe this will help us to approach potential supporters with relevant fundraising projects, latest activities and appeals.


2a. Processing donations

We securely process donations made to The Cure CJD Campaign through our CRM system, Donorfy, where we store your donation history, personal contact details, and marketing preferences. We do not store your payment details. Payments are processed securely by Stripe, our online payment portal (read the Stripe privacy policy).


2b. Storing your data for marketing purposes

The Cure CJD Campaign sends users who have given their prior consent, either through a contact form, subscribe form or donation form on this website, emails that include relevant information and news related to our work and fundraising activities. We do this using a tool called MailChimp, and the MailChimp privacy policy applies. The user can unsubscribe from these emails at any time through a link in the footer of any Mailchimp email. All personal data and marketing preferences are stored securely.


3. How we use your information

Your information may be used for a number of purposes including the following:

  • To provide you with information that you have requested
  • To help you with creating an online donation account
  • To claim Gift Aid on your donation from HMRC
  • To process entries into a prize draw or raffle
  • To gain better understanding of our supporters and provide you with relevant information about our work and how you can help us, for example, information about our fundraising activities, volunteering and campaigns
  • To send direct marketing that includes products, news and information on volunteering opportunities, work that we do at UCLH, appeals and fundraising, our events, activities and leaving a legacy
  • To use IP addresses to identify your approximate location, to block disruptive use, to record website traffic or to personalise the way our information is presented to you
  • To analyse the information available to us such as your postcode, history of support and interests in order to gain a better understanding of our supporters and provide you with relevant information about our work and how you can help us, for example, information about our fundraising activities, volunteering and campaigns. For a small number of individuals, we may combine the data which you have provided with other publicly available financial, business, philanthropic and demographic information in order to ensure that requests for major gifts are directed to only those who we believe may be able and willing to give
  • Internal analysis and research to determine for example success of our activities
  • To detect and reduce fraud and credit risk
  • To thank you for your support
  • To ensure statutory and regulatory compliance
  • To use for other purposes – but we will notify you about this and obtain your consent

If you do not wish your data to be used in any of the listed ways, please let us know at the above address.


4. How we share your information

We sometimes share your information with UCLH and with our trusted service providers such as mailing companies who are authorised to act on our behalf and our fundraising platform.

We may exchange your information with other organisations for the purposes of fraud and credit risk reduction. We will be obligated to share your information if we are legally required to do so.

We will not sell your details to any third parties. We will only share your data to other parties if we have your expressed consent.

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


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

We have appropriate technical controls in place to protect your personal data.

Our fundraising platform uses a secure server when you enter into any financial transaction.

Reviews are carried out to establish who has access to information that we hold and to ensure that your information is only accessible by appropriately trained and authorised personnel.

We will keep your data for as long as only necessary for the smooth running of our services. We will take into consideration our legal obligations and tax and accounting rules when determining how long we should retain your information.

When we no longer need to retain your information we will ensure it is securely disposed of, at the appropriate time. In the meantime we ensure appropriate technical controls are in place to safeguard your personal details.


Links to other websites

The Cure CJD Campaign 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.


How we use cookies

We use cookies to give you a more personalised web service and to provide information to the owners of the site.

Cookies mean that a website will remember you. Cookies are small text files that sites transfer to your computer (or phone or tablet) to make interacting with a website faster and easier.

We use cookies on the website for our own internal purposes, to track how users navigate through the website and therefore how to improve our online services.

The information gathered from cookies help us to: review how our website is being used and therefore help us to improve our website and online services; simplify your ability to navigate through the website; personalise and improve the service offered to you by understanding your preferences and establishing which areas of the website are most relevant to you; know if the website is operating effectively.

In addition, 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.

Find out more by reading our Cookie Policy. 


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

The accuracy of your information is important to us. Please let us know of any changes at the above address. If you wish to access the information we hold about you, please send a description of the information you want and it may be necessary to send proof of your identity. Please email us at su*****@cu*****.org or write to us at 5th Floor East, 250 Euston Road, London NW1 2PG.

You have the right to:

  • request a copy of the information we hold about you
  • update or amend the information we hold about you if it is wrong
  • change your communication preferences at any time
  • ask us to remove your personal information from our records
  • raise an objection about the way in which your information is being used


7. Changes to this policy

We may change this policy from time to time, if we were to make significant changes to the policy, we will highlight this clearly in our website or we may contact you directly.

Last updated: January 2024