Privacy Policy

This Privacy Policy applies to information DDX3X Support UK, (also referred to as “us” or “we”)collect about individuals who interact with our organisation. It explains what personal information we collect and how we use it.  We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect. By visiting our websites or applications, contacting us (by email, on social media or otherwise) or using our products or services, you are accepting and consenting to the practices described in this policy.

If you have any comments or questions about this notice, feel free to contact us at

  1. Personal data that we process

The following explains the types of data we collect and the legal basis, under current data protection legislation, on which this data is processed.

Enquiring about our organisation and its work

  • Name, email, message
  • Legitimate interests – it is necessary for us to read and store your message so that we can respond in the way that you would expect.

Contact us form

  • Name, email, address
  • Legitimate interests – Consent – you have given your active consent.

Other ways where you may provide personal data to us
For example, at events organised or attended by us, when you participate in discussion boards or other social media functions or enter a competition or survey, in relation to grant applications

  • Name, email, address, telephone number, Patient details which may include date of birth, gender, weight, diagnosis, specialist doctor, hospital, sibling details which may include name, date of birth, gender, Specialism and affiliation information (for professionals)
  • Legitimate interests – Consent – you have given your active consent.

Making a donation

  • Name, email, address, payment information
  • Legitimate interests – this information is necessary for us to fulfil your intention of donating money and your expectation of receiving a confirmation message.

Website functionality

  • Website activity collected through cookies
  • Legitimate interests – it is necessary for us to store a small amount of information, usually through cookies, to deliver functionality that you would expect, such as remembering the contents of your order before you have fully completed the process.

We may also obtain information about your opinions if, for example, you send us feedback, or ask us questions.

You may also give us your information indirectly e.g. fundraising sites like JustGiving. This will happen only with your consent and you should check their privacy policy when you provide information to understand fully how they will process your data.

Some people choose to tell us more about their experiences with a DDX3X mutation. This helps us enormously in our work and provides assistance to other people and families affected. This may include people sharing sensitive personal information related to their health and family life in addition to contact information. If we have the explicit and informed consent of the individuals, or their parent or guardian if they 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.

  1. How we use your data

We will only use your data in a manner that is appropriate considering the basis on which that data was collected, as set out in the table at the top of this policy.

For example, we may use your personal information to:

  • reply to enquiries you send to us;
  • handle donations or other transactions that you initiate;
  • help us provide you with the services, products or information you asked for
  • administer your donation or support your fundraising, including processing gift aid
  • keep a record of your relationship with us
  • ensure we know how you prefer to be contacted
  • understand how we can improve our services, products or information
  • better organise events
  • general marketing purposes
  • help us with charity administration
  • help us improve your online experience
  1. When we share your data 

We only allow access to personal information about you to our trustees and employees who require that information in order to provide products or services to you. We ensure that third parties, who work with us to make our website available to you, and to deal with your orders and requests, agree to protect your personal information. All information you provide to us is stored on our secure servers.

We will only pass your data to third parties in the following circumstances:

  • you have provided your explicit consent for us to pass data to a named third party;
  • we are using a third party purely for the purposes of processing data on our behalf and we have in place a data processing agreement with that third party that fulfils our legal obligations in relation to the use of third-party data processors; or
  • we are required by law to share your data.

In addition, we will only pass data to third parties outside of the EU where appropriate safeguards are in place as defined by Article 46 of the General Data Protection Regulation.

  1. How long we keep your data 

We take steps to ensure that the personal data that you provide is retained for only as long as it is necessary for the purpose for which it was collected. After this period, it will be deleted or in some cases anonymised. Where we have collected the personal data based on your consent and we have no other lawful basis to continue with that processing, if you subsequently withdraw your consent then we will delete your personal data.

  1. Rights you have over your data

Data protection law gives you certain rights in relation to your personal data. These include: the right to access information held about you, the right to object to it being used for certain purposes (for example marketing), and the right to have personal data deleted, restricted and in certain cases to receive a machine-readable copy of your personal data.

If you would like to exercise your right of access, to the extent you cannot access your information by logging into your online account, please submit your request at the address below, or using the ‘Contact Us’ page online. If permitted by applicable law, any access request may be subject to a fee to meet our costs in providing you with details of the information we hold about you. For information about how to request access and correction of your personal data, see the relevant section above.

We will handle any request to exercise your rights in accordance with applicable law and any relevant legal exemptions. If you wish to exercise any of these rights, please conduct us using the contact details below.

You may also have the right to complain to a data protection authority if you think we have processed your personal data in a manner which is unlawful or breaches your rights. If you have such concerns, we request that you initially contact us (using the contact details below) so that we can investigate, and hopefully resolve, your concerns.

  1. Cookies & usage tracking

Like most websites we use “cookies” to provide you with a good experience when you are using the website and allows us to improve it. A cookie is a small file which asks permission to be placed on your computer’s hard drive. Once you agree, the file is added, and the cookie makes interacting with a website faster and easier to use e.g. by automatically filling in your name and address in a text field.

We also use web analytics cookies to help us understand what content is most useful to our visitors. They allow us to recognise and count the number of visitors and to see how visitors move around the site when they’re using it. This helps us to improve the way our website works, for example by making sure that users are finding what they need easily.

You can block cookies by activating the setting on your browser which allows you to refuse the setting of all or some cookies. However, if you use your browser settings to block all cookies, you may not be able to access all, or parts of our site, and might not be able to shop on the website. Only cookies that are strictly necessary or for the purpose of using our shop, are set automatically. All other cookies will not be set without your consent.

Please visit to find out more about cookies.

  1. Links to other websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. Please check these policies before you submit any personal data to these websites.

  1. Modifications

We may modify this Privacy Policy from time to time and will publish the most current version on our website. If a modification meaningfully reduces your rights, we will notify people whose personal data we hold and is affected. This policy is effective from June 2019. DDX3X Support UK is registered at East Stoke Farmhouse, Old Stoke Road, Stoke Charity, Winchester, Hampshire SO21 3PL