Privacy Statement 2018-06-08T09:51:45+00:00

Privacy Statement

Maintaining the security of your data is a priority for us, and we are committed to respecting your privacy rights. We pledge to ensure your data is captured and stored both fairly and legally at all times, and offer complete transparency about what data we collect about you and how we use it.

This policy provides you with information about:

  • how we use your data;
  • what personal data we collect;
  • how we ensure your privacy is maintained;
  • your legal rights relating to your personal data.

How we use your data

The Charlie Gard Foundation (and trusted partners working with us) uses your personal data:

  • to provide goods and services to you;
  • to verify your identity;
  • for crime and fraud prevention, detection and related purposes;
  • with your agreement, to contact you electronically about fundraising activities, and information that we think may be of interest to you. An unsubscribe facility is available to anyone who wishes to opt out from receiving further information from The Charlie Gard Foundation.

Sharing data with third parties

In order to make certain services available to you, we may need to share your personal data with some of our trusted partners.

The Charlie Gard Foundation only allows its trusted partners to handle your personal data when we have confirmed that they apply appropriate data protection and security controls. We will always seek consent prior to offering any information to a third party. This will be via our client contact form.

Other third parties

Aside from our trusted partners, The Charlie Gard Foundation will not disclose your personal data to any third party, except as set out below. We will never sell or rent our customer data to other organisations for marketing purposes.

We may share your data with:

  • credit reference agencies where necessary for card payments via our shop;
  • governmental bodies, regulators, law enforcement agencies, courts/tribunals and insurers where we are required to do so:
    • to comply with our legal obligations;
    • to exercise our legal rights (for example in court cases).

How long do we keep your data?

We will not retain your data for longer than necessary for the purposes set out in this Policy. Different retention periods apply for different types of data, however the longest we will normally hold any personal data is 6 years.

What personal data do we collect?

The Charlie Gard Foundation may collect the following information about you:

  • your name, age/date of birth and gender;
  • your contact details: postal address including billing and delivery addresses, telephone numbers (including mobile numbers) and e-mail address;
  • purchases and orders made by you;
  • your location;
  • your medical history (clients only);
  • your correspondence and communications with The Charlie Gard Foundation.

Our website is not intended for children and we do not knowingly collect data relating to children.

This list is not exhaustive and, in specific instances, we may need to collect additional data for the purposes set out in this Policy.

We also receive personal data from trusted partners who provide services to our customers under the Charlie Gard Foundation brand.

Whose information do we collect?

We will collect information about:

  • people who send us an application to be considered for grants, support or other assistance from us;
  • people who make enquiries to us who have not previously applied for grants or services;
  • people who support us (including people who make donations or fundraise on our behalf);
  • people who apply for a role with us;
  • people who wish to volunteer for us;
  • people who wish to share their story with us;
  • people who register for our newsletter.

This Privacy Policy applies to anybody who submits their personal data to us in any of the above circumstances (whether it is submitted via our website, on a paper form, by email, over the telephone, in person or by any other means).

People who share their story with us

You may choose to tell us about your experiences to help further our work. This may include setting up a webpage for fundraising, writing a blog for our website or posting your story on social media. This may include sharing sensitive information related to your health and family life in addition to your biographical and contact information. Where you share this information on social media on our public page please note this information will be shared with our followers.

This information will not be shared outside our organisation without your explicit and informed consent. If we have your explicit and informed consent, or that of your parent or guardian if you are under 18, this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report and on our website.

You will ensure that any information you supply to us is accurate and up to date, and inform us if any such information requires updating. You also promise that, if you submit any other person’s details to us, you have that other person’s permission to do so or are otherwise legally permitted to do so.

We are committed to ensuring that all personal information we hold is treated properly and in accordance with applicable data protection legislation. We are registered as a data controller with the Information Commissioner’s Office and our registration number is

However, you have the right to lodge a complaint with the Information Commissioner’s Office if you have any concerns with regard to the way in which we process your personal information.

How we protect your data

The Charlie Gard Foundation is committed to keeping your personal data safe and secure.

Our security measures include:

  • encryption of data;
  • regular cyber security assessments of all service providers who may handle your personal data;
  • regular scenario planning and crisis management exercises to ensure we are ready to respond to cyber security attacks and data security incidents;
  • internal policies setting out our data security.

What you can do to help protect your data

The Charlie Gard Foundation will never ask you to confirm any bank account or credit card details via email. If you receive an email claiming to be from The Charlie Gard Foundation asking you to do so, please ignore it and do not respond.

If you are using a computing device in a public location, we recommend that you always log out and close the website browser when you complete an online session.

Your rights

You have the following rights:

  • the right to ask what personal data that we hold about you at any time;
  • the right to ask us to update and correct any out-of-date or incorrect personal data that we hold about you free of charge; and
  • (as set out above) the right to opt out of any marketing communications that we may send you.

In accordance with applicable data protection legislation, we follow security procedures in the storage and disclosure of your information. We may therefore request proof of your identity before complying with any other request of a nature described above.

You will not generally have to pay a fee to exercise any of your rights described above. However, we may charge a reasonable fee if you make a request to see a copy of your personal information which is clearly unfounded or excessive. Alternatively, we may refuse to comply with your request in such circumstances.

If you wish to exercise any of the above rights, please contact our Data Protection Officer by post at our registered address or by email at