Our Privacy Policy

Privacy and Cookies Policy

Version 2.0 (Date last updated: 15/09/2021)

The Lily Foundation operates this website. At The Lily Foundation we take your right to privacy very seriously. For that reason, we have set out this privacy and cookies policy so you can make sure you understand how and why we use the information you give us. The terms of this policy may change, so please check it from time to time.

If you have any queries about this policy please contact: Clare Stead, Assigned Data Controller – [email protected]

Who are we?

The Lily Foundation is a company limited by guarantee, registered in England and Wales under company number 6400879 and registered as a charity with the Charity Commission for England and Wales under number: 1122071 whose registered office is at 31 Warren Park, Warlingham, Surrey, CR6 9LD.

How we collect information from you

The Lily Foundation is the sole owner of the information submitted by you, to us, in any way. We may use this information gathered during our organisation’s stated role, to further our charitable aims and to further understand our supporters and how best we can support you. However, we will not ever sell or rent personally identifiable information that you have submitted to this site to third parties.

Collection of your information may be through:

  • Our online shop
  • Your registration to an event via our website (we will only contact you about this event unless you have specified otherwise)
  • Your information passed from a third party you have registered with for a fundraising event (in this instance please always refer to their Privacy Policy too)
  • Via your phone call to the charity (we will always refer to our marketing preferences and make sure that we have your consent to contact you further)
  • Via a written consent form you have sent to the charity

Information we collect about you

Is the information that you have given us. 

Information collected by a third party

Your information may be shared with us by third party organisations, for example fundraising sites, like Virgin Money Giving and Just Giving, Run for Charity and Skyline. They will do so pursuant to their own policies on data protection and privacy. It’s a good idea to check their privacy policy when you provide your information to understand fully how they will process your data.

Special category or sensitive information

Some health information that you may tell us falls under what is deemed as sensitive information, such as your genetic data or health information. As with all the personal information you provide us, you can be assured that any sensitive information you choose to supply will be kept confidential and identifiable data will only be shared with your consent.

By signing up to our Medical Registry or completing our health questionnaires, you are agreeing to share sensitive data with The Lily Foundation. Medical Registry information is stored in a way that means you can only be identified by a very small number of approved individuals within the Lily Foundation charity. We will never share identifiable data or contact details with third parties without your permission.

Health questionnaire data is stored securely for The Lily Foundation by a third-party survey app called freeonlinesurveys.com

De-identified data may be shared with 3rd parties within the UK or internationally, to help further our charitable goals of improving patient care and enabling better access to effective treatments.

What are we collecting?

The UK Mito Patient Registry will collect the following data:

  • Your name/ affected child name
  • DOB
  • Ethnic background
  • 1st language
  • Address/ postcode
  • Hospital /consultant names and addresses
  • Syndrome diagnosis if known
  • Biochemical diagnosis if known
  • Genetic Diagnosis if known
  • Symptoms

Why do we collect this sensitive information?

Research Studies.
We are often approached by research groups looking for suitable patients for studies and trials. The information we collect in our registry makes finding suitable patients a much quicker and more reliable process. We will contact you with trial details and it will always be your decision whether to participate or not. We will never share your contact details outside the charity without your permission.

Support Services
As a charity we like to ensure that we are providing the best possible service for our patients. By understanding demographics and the disease spread it will help to ensure that our services are targeted in the right areas

Who do we share your data with?
Identifiable special category data or sensitive data will not be shared with third parties without your knowledge and consent.
Contact data will not be used for marketing purposes unless you have opted in.

Retention of data
We will retain your information for as long as we feel necessary. If at any stage you would like us to delete your information you can do this by contacting [email protected]

We use your data to:

  • Provide you with the services, products or information you have asked for (for example when you purchase an item from our shop or sign up to an event via our website)
  • For specific sporting events we will share your email with third parties to process registration (i.e. London Marathon event)
  • Administer your donation or support your fundraising, including processing Gift Aid.
  • Add you to our database
  • Keep a record of your relationship with us
  • Comply with financial regulations and the law
  • To contact you for marketing purposes by email if you have opted in to receive these. If you have provided us with your postal address or telephone number, we may send you direct mail for marketing purposes unless you have told us that you would prefer not to receive such information. 

You may opt-out of marketing emails at any time by clicking the ‘unsubscribe’ link in our marketing emails. You can also change your contact preferences at any time, including telling us to no longer send you marketing by post, by contacting [email protected] or calling 0300 400 1234

If you request to receive no further contact from us, we will keep some basic information in order to avoid sending you unwanted materials in the future, and to ensure that we do not accidentally store details for the same person multiple times.

How long do we keep your personal data?

We keep personal data only for as long as it’s necessary. When it comes to financial donations and Gift Aid, we’re required to keep information such as the supporter’s name, address, Gift Aid declaration form(s) and financial information for 7 years for HMRC auditing purposes. We’ll retain basic information (such as a supporter’s postcode and transactional history). We believe it’s important to keep basic information of this kind in case someone leaves a gift in their Will to us and we’re re required to evidence the nature of their support if it’s contested.  

How do we protect personal information?

We use a secure server when you make a donation or payment via our website. We take appropriate measures to ensure that the personal information disclosed to us is kept secure, accurate and up to date and kept only for so long as is necessary for the purposes for which it is used. All personal information is stored in a central database which has stringent measures in place for restricting access and preventing external data breaches.

We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained staff and third-party organisations who have been contracted by us to process data. Our approach to personal information involves restricting access to sensitive personal information, for example health information and financial contributions, to only those departments that need this data in order to carry out their functions.

We use external companies to collect or process personal data on our behalf. We make sure we only work with companies that comply with the Payment Card Industry Data Security Standard (PCI DSS) and we do annual reviews of their data processes to be certain that they meet our GDPR expectations and requirements.

The data we collect from you may be transferred to, and stored at, a destination outside the European Economic Area (EEA) i.e USA. It may also be processed by persons operating outside the EEA.

We use the following systems for processing and storing your data:

Dropbox for Business – Please click here to read their Privacy Policy

Mailchimp – Please click here to read their Privacy Policy

Survey Monkey – Please click here to read their Privacy Policy

Microsoft – Please click here to read their Privacy Policy

Gmail  - please click here to read their Privacy Policy

Facebook – please click here to read their Privacy Policy

Acuity Unified Communications – Please click here to view their Privacy Policy

Unfortunately, no data transmission over the internet can be completely secure. Whilst we do our best to protect your personal data, we cannot guarantee the security of any information which you transmit to us online and you must understand that you do so at your own risk. 

Your consent

By providing us with your personal data, including sensitive personal data such as your state of health, you consent to the collection and use of this information in accordance with the purposes described above and this privacy statement.

You also consent to our transferring your information to countries or jurisdictions outside the UK if necessary for the above purposes. These countries may not provide the same level of data protection as the UK.

Your rights under the GDPR

The General Data Protection Regulation (GDPR) gives you more control over what happens to your personal information. Under this legislation you have the right to:

  • be given clear, transparent and free information about how your data will be used;
  • access your personal data so that you can see how your personal information is being used by us;
  • have your personal information updated and corrected;
  • obtain and reuse the personal data you have given to us for your own purposes;
  • request that we permanently delete or remove your information where there is no “compelling” reason for us to keep it; and
  • request that we don’t use your personal data for specific purposes and, unless we are under a legal or contractual obligation, we must respect your wishes;

The GDPR also prohibits us from using solely automated technologies to build profiles and make decisions about people who support us which will have “legal or similarly significant effects”, unless:

  • it’s necessary to fulfil a contract;
  • it’s been authorised by a Union or Member state law; or
  • you’ve given your explicit consent for your information to be used in this way

How to access and update your personal information

We want to make sure that your personal information is accurate and up to date. You may ask us to correct or remove information you think is inaccurate by contacting us using the contact details below. You may also withdraw your consent for us to keep your personal data for some of the above purposes by writing to the address below.

You have a right to access the personal information we hold about you and in certain circumstances to be provided with a copy of that information. You can request this free of charge by email to [email protected] or by writing to:

The Lily Foundation

31 Warren Park




If you are unhappy with the way in which your personal data has been handled you are entitled to make a complaint to the Information Commissioner’s Office.

How we use cookies

A cookie is a small piece of information that we may put on your computer or mobile device. There are several types of cookie and they have different functions, such as saving your passwords and site preferences. We use cookies to help us understand your interests and preferences, and distinguish you from other users, to ensure the website is as user friendly and relevant as possible and to provide you with information specifically tailored to your interests.

You may refuse the use of cookies by selecting the appropriate settings on your browser, however please note that if you do this you may not be able to use the full functionality of this website.

How we use cookies:

We may use cookies to:

  • Analyse our web traffic using an analytics package. This aggregated data on usage helps us improve the website design, structure, content and function
  • Test content on the website. For example, 50% of our users may see one piece of content, the other 50% will see something else

Cookies do not provide us with access to your computer or any information about you, other than that which you choose to share with us.

Most browsers accept cookies by default but allow you to stop receiving cookies if you prefer. If you do not accept our use of cookies as set out in this policy, change the settings in your browser (normally via the Privacy section). This may impair your ability to use our website.

For further assistance visit in your browser or www.aboutcookies.org.

Changes to this Privacy Policy

We may change the terms of this privacy policy from time to time. If we do so, we will post the changes here so please check from time to time. By continuing to use our website you will be deemed to have accepted such changes.