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. 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.

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 participate in discussion boards or other social media functions or enter a competition or survey, 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)
  • Photograph

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.

Legal Basis for processing your information

We will only process your personal data where we have a legal basis to do so. The legal basis will vary depending on the purposes for which we have collected and use your personal data. In almost all cases, the legal basis will be one of the following:

Specific consent

Consent is where we ask you if we can use your information in a certain way, and you agree to this (for example when we send you marketing material via post, phone, text or e-mail). Where we use your information for a purpose based on consent, you have the right to withdraw consent for any future use of your information for this purpose at any time.

Performance of a contract / take steps at your request to prepare for entry into a contract

We have a basis to use your personal information where we are entering into a contract with you or performing our obligations under that contract. Examples of this would be if you are buying something from us (for instance some branded merchandise or, in some cases, an event place), applying to work/volunteer with us, or being funded to undertake research.

Legitimate interests

In broad terms, our “legitimate interests” means our interest in being able to run Dravet UK as a charitable entity effectively in pursuit of our aims and ideals. We consider our legitimate interests to include all of the day-to-day activities Dravet UK carries out with personal information. Some examples not mentioned under the other bases above where we are relying on legitimate interests are:

  • Sending direct marketing material to supporters by post for fundraising purposes
  • Providing information about Dravet Syndrome health
  • Processing donations
  • Administering events
  • Staff recruitment and taking applications for volunteers and contacting volunteers about their role

However “legitimate interests” can also include your interests, such as when you have requested information or certain goods/services from us, and those of third parties.

If we rely on the "legitimate interests" basis to use your personal information, we will only use the information in accordance with the purposes described in this Policy.

When we legitimately process your personal information in this way, we also consider and balance any potential impact on you (both positive and negative), and your rights under data protection laws. We will not use your personal information for activities where our interests are overridden by the impact on you, for example where collection and use of your information would be excessively intrusive (unless, for instance, we are otherwise required or permitted to by law).

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.

Your information is stored in the UK on our secure servers. However, some 3rd party services we use, such as our web analytics and our email marketing systems are located outside of the European Economic Area (EEA) or Switzerland. The data we send to these is anonymised (in the case of the analytics data) and only as much data as strictly necessary for the email marketing system. To protect your information all these 3rd party providers are EU-U.S. Privacy Shield Framework certified.

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. This is only collected in the event of an error on the site and is purely for diagnostic purposes.

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 also use cookies for the shopping cart, allowing you to purchase items from our store.

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.

If you wish to remove Google Analytics Cookies please click here to remove them.

The cookies we set are:

  • ASP.NET_SessionId = Is a cookie which is used to identify the users session on the server
  • __RequestVerificationToken = Is cookie used to guarantees that the poster form data is valid and has not been tempered
  • _ga, _gat, _gid, __utma, __utmz = Used by google analytics to measure user-interactions on websites
  • cookiePolicyConsent = Used to record if user has consented to cookie bar and enabled google analytics
  • BasketID = Used to log unique basket identify

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 www.aboutcookies.org 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. These include our webhosts, accountants, web traffic monitoring service and email marketing systems.

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.

RETENTION OF YOUR INFORMATION

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.

Your Rights

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.

Contact

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 May 2018.

For the purpose of EU and UK data protection law, the data controller is Dravet Syndrome UK. Registered Charity: 1128289 Dravet Syndrome UK, PO Box 756, Chesterfield, S43 9EB