Sturge Weber UK, Registered Charity No. 1016688 Last updated: [date to be confirmed when published]
This replaces the version last updated in January 2021.
What this policy covers
At Sturge Weber UK, we want you to trust us with your personal information, especially given the sensitive nature of some of what we hold. This policy explains:
Who we are
We are Sturge Weber UK, the UK’s only charity dedicated to people with Sturge-Weber Syndrome. We are registered with the Charity Commission (number 1016688) and registered as a data controller with the Information Commissioner’s Office under the Data Protection Act 2018 and UK GDPR, registration number Z7537717.
Our address: Green Lane Farm, 16 Green Lane, Sowood, Halifax, HX4 9JL Email: support@sturgeweber.org.uk Phone: 0300 772 7133
What information we collect
Personal information, such as your name, address, phone number, email address, and bank or payment details if you donate or pay for an event.
Special category information. We sometimes ask for information about a person’s Sturge-Weber Syndrome diagnosis, symptoms, care needs, or behaviour. This is what data protection law calls “special category” information, and it gets extra protection. We collect it only with explicit permission, and only where we genuinely need it, most often to keep children safe at our events, including the Family Weekend and Activity Club, to organise outings appropriately, or where you have chosen to take part in research into Sturge-Weber Syndrome.
Non-personal information, such as your IP address and how you use our website, collected automatically when you browse our site.
Children’s information
Many of the people our charity supports are children, and we hold information about them provided by a parent or guardian on their behalf. We do not knowingly collect information directly from a child without a parent or guardian’s involvement. If you are a parent or guardian and want to see, correct, or ask us to delete information we hold about your child, contact us using the details above and we will treat this the same as any other request under “Your rights,” below.
Photographs and images
At events such as the Family Weekend and Activity Club, we or people acting for us may take photographs or video. We ask for your specific, separate permission before using any photograph or video that includes a child, whether that use is on our website, in our newsletter, or on social media. You do not have to agree, and it will not affect your or your child’s ability to take part in our events. You can withdraw this permission at any time by contacting us, and we will stop using the image in future, though we cannot always recall material already shared or printed by others.
Why we collect your information, and what gives us the right to
We rely on different legal grounds depending on what we’re doing with your information:
You can withdraw consent at any time; this does not affect anything we did while your consent was in place.
How we collect information
Directly, when you register on our website, request a service, fundraise for us, donate, sign up to a campaign, add Gift Aid, or otherwise give us information yourself.
Indirectly, including through third parties such as JustGiving or Enthuse when you donate or book an event through them, or through a social media platform if you have given that platform permission to share information with us.
How we use your information
We use your information to provide the services or information you have asked for, process donations and event payments (including Gift Aid claims with HMRC), keep a record of our communications with you, manage how and how often we contact you, and respond to complaints, queries, or legal claims. Where you have agreed to it, we may also use your information for research or to understand how people engage with our work, so we can do it better.
How and when we share your information with others
We do not sell or rent your information, and we do not share it with other organisations for their own marketing or fundraising. We do use a small number of carefully chosen organisations to help us deliver our services, including:
We only give these organisations the information they need to do the job we’ve asked them to do, and we expect them to protect it to the same standard we do.
Internally, access to your information is limited to trustees, staff, and volunteers who need it to do their role, and we maintain a record of who has access to what.
We may also share information where we believe it is genuinely necessary to meet a legal obligation, prevent fraud, or protect the safety of Sturge Weber UK, the people we support, or the public.
How long we keep your information
We keep your information for as long as you have an active relationship with us. Financial records, including those relating to Gift Aid, are kept for the period required by law (currently six years), after which we securely delete or anonymise them. If you ask us to delete your information sooner, we will do so unless we are legally required to keep it.
Your rights
You have the right to:
To make a request, contact us at support@sturgeweber.org.uk or write to us at the address above. We will respond within one calendar month of receiving your request, as required by law. If your request is complex, we may need up to a further two months, and we will explain why if so.
If you are unhappy with how we have handled your information, you can also complain to the Information Commissioner’s Office (ico.org.uk), the UK’s independent regulator for data protection.
How we store your information
We use appropriate technical and organisational measures to protect your information, including encrypted online forms and regularly reviewed access controls. We regularly check who has access to the information we hold and remove access that is no longer needed.
Our use of cookies
Our website uses cookies, small pieces of information stored on your device, to remember your preferences, recognise if you’re logged in to a members’ area, and understand how people use our site so we can improve it. Some cookies are set by Google, which we use to deliver parts of our site, personalise content, and analyse traffic; information about your use of our site is shared with Google as a result. You can find out more about cookies, and how to control or delete them, at www.gov.uk/help/cookies. You can manage your cookie preferences on our site using the cookie settings tool.
Following links to third-party websites
Our website contains links to other websites. We are not responsible for the privacy practices of those sites, and we recommend reading their own privacy policies.
Our fundraising promise
Changes to this policy
We will update this policy when our practices change and will always keep the current version available on our website. We will note major changes here and, where appropriate, let you know directly.
Questions
If anything in this policy is unclear, email support@sturgeweber.org.uk and we’ll be glad to explain.
