Privacy Policy

Dravet Syndrome UK (also referred to as “us” or “we”) are committed to protecting and respecting your privacy. This privacy policy sets out how we treat any personal data that you may give us or we collect from you. We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect.

What information do we collect

We may collect the following information when you give your details via the Contact Us form or in other ways where you may provide personal data to us, for example, at events organised or attended by us, when you make a purchase, in relation to grant applications, in relation to monitor applications.

  • Name
  • Postal address
  • 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)

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 Dravet. 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.

How we use the information we gather

We use information held about you to:-

  • 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

In addition we may use your information to inform you from time to time of other products and/or services we offer which we consider may be of interest to you. If you do not want to receive information in this way then you should tick the relevant box in the Website when we ask for your consent to do this. You may otherwise email us by using the Contact Us form to indicate that you do not want to receive information in this way from us.

How we protect your information

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. If you have registered for an account with password access, you are responsible for keeping your password confidential. We ask you not to share your login details with anyone. Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted to our site; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.

We may need to disclose your details if required 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.

IP addresses

We may collect information about your computer, including your IP address, operating system and browser type, for system administration and to report to our advertisers. This is statistical data about your browsing actions and patterns, and does not identify you as an individual.

How we use cookies

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 eg by automatically filling in your name and address in a text field.

The cookies used on the Dravet Syndrome UK site are as follows:

We use session cookies that allow you to be remembered within the website, so any page changes or item or data selection you do is recalled from page to page. This means that you don’t get asked the same information that you’ve already given to the site. These cookies are temporary and are erased when you close your browser at the end of your surfing session.

We use tracking cookies. These help us to remember your information and settings when you visit our website in the future. This results in a faster and more convenient access and may enhance your experience of services or functions we offer. These cookies remain on your hard drive until you delete them or they expire (they have varying expiry dates).

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. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies as soon you visit our site.

Please visit to find out more about cookies.

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.

Removal of Data

You have the right to ask us not to process your personal data at any time by sending us an email via the Contact Us form.

Agents and Service Providers

We sometimes employ other companies and individuals to perform functions on our behalf. They may need access to your personal information in order to perform their functions. However they may not use your personal information for any other purpose.

Access and Corrections

If we process personal information about you, then you have a right to request access to that personal information (for which we may charge a small fee). You also have a right to require any inaccuracies in your information to be corrected free of charge. You can ask us to modify your details by using the form that can be found on the Contact Us page. We really appreciate it if you let us know if your contact details change.

We ask you to read this Privacy Policy carefully. Any dispute which may arise over privacy will be subject to this policy and the provisions of English law. We may change our Privacy Policy from time to time by updating this page. You should therefore check this page occasionally to ensure that you are aware of the most recent version which will apply each time you access this website. This policy is effective from February 2017.

Dravet Syndrome UK. Registered Charity: 1128289