Dravet Syndrome UK (also referred to as “us” or “we”) are committed to protecting and respecting your privacy. This notice sets out how we treat any personal data that we collect from or about you. We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect.
If you have any questions about how we use your information, or want to exercise your rights over your information, you can contact us in writing, by phone or email.
What information do we collect and process about you, what do we do with it and why?
When you contact us
If you get in touch with us, by phone, email, post, in person or via the website, you may provide us with personal information. For example, if you use our website contact form, we ask for your name, email address and contact details. We will only use the information you provide us to deal with your enquiry, unless you have opted in for marketing.
We justify this processing based on your consent in contacting us.
To manage our relationship with you
We collect information about families, health and social care professionals. This information may include demographic details, contact details and preferences, information about your family and professional life and information about your interactions with us.
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.
We also manage information relating to your online account such as log in information, passwords and details of files accessed.
We do this based on our legitimate interest in fulfilling charity’s objectives, including supporting families, working with health and social professionals. When we process your personal information in this way, we also consider and balance any potential impact on you, and your privacy rights and freedoms as an individual. We will not use your personal information for activities where our interests are overridden by the impact on you.
Where we collect sensitive information such as health data, we do so only with your consent or the consent of an adult with legal responsibility for you.
To manage and sell products in our shop
For this we will collect information such as your payment details, which are handled securely by a third party, delivery address and information relating to purchases, refunds and queries.
We justify this processing based on the performance of a contract (i.e. the transaction) as well as in our legitimate interest to maintain an efficient retail operation.
To promote our work
We may contact you to let you know about the work that we do and the ways in which we are trying to fulfil our objectives. We may also use information about you to promote our work, through social media, publications such as our annual report or other channels.
We will only do this with your consent, which you can withdraw at any time.
To run events for families and professionals
When we run events we may collect information about you, such as contact details, dietary preferences, accessibility requirements.
Where we collect sensitive information such as health data, we do so only with your consent or the consent of an adult with legal responsibility for you.
To inform you about services and products that we offer
We may contact you to let you know about the services and products that we offer, such as opportunities for grants and other support, or products which we sell through our online shop.
We will only do this with your consent, which you can withdraw at any time.
To raise funds for the work that we do
We collect information about our donors including demographic information, contact details, payment details and information about donations, including size and habits. We do this based on our legitimate interest to raise and mange funds for the charity.
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.
To run and govern the charity
We may process information about you in order to run and govern the charity. This may include information about people’s behaviour, demographic information as well as information relating to risks and concerns, such as matters relating to safeguarding, which may include sensitive information. We do this in order to fulfil our legal obligations under UK charity law.
To manage our website
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. We do this based on our legitimate interest to run the charity effectively and efficiently.
When you apply for a job or voluntary position with us
When you apply for a job with us, the personal information you provide to us may include your name, address (including email address), job and career history, educational background, professional membership and other relevant information from your CV.
We may also require you to undergo reference checks and/or a criminal record check ahead of working with us. This will involve seeking information about you from other organisations or people.
We process the information you provide to us on the basis of discussing a possible contract of employment and to fulfil our legal obligations to safeguard vulnerable people from harm.
How we protect your information
We only allow access to personal information about you to our staff, volunteers and partners who require that information in order to provide carry out the activities described above. 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. 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.
This policy was last updated in January 2025.