The Tuberous Sclerosis Association (TSA) takes great care to safeguard personal data provided by our supporters and to process this data fairly and lawfully in accordance with the Data Protection Act 1998 and the upcoming General Data Protection Regulations (GDPR) which come into force at the end of May 2018.
We may collect personal information that you give us about you or your family whenever you contact or interact with the Tuberous Sclerosis Association (TSA).
This may include:
● Registering as a Member or Supporter
● Signing up for our email newsletters
● Questions, queries or feedback you send us via email or the website
● Phone calls to us
● Surveys you participate in
● Registering to attend an event
● When you place orders for merchandise on our website
● Information posted via social media
● Information given in person during an event or meeting with a TSA staff member or volunteer
● Your IP address and details of which version of web browser you used when you use the TSA website tuberous-sclerosis.org.
● Information on how you use the TSA website, using cookies and page tagging techniques to help us improve the website. We can’t personally identify you using this data.
● Contacting us in any other way
The main reason we need your personal details is to enable us to communicate with you and keep you informed about what we’re doing and opportunities to support you or for you to support our work.
We will only contact you if you tell us that you are happy for us to do so (this is called 'opting-in'). You can do this when you register on our website, or when you speak to a member of staff. When you register on our website you will be able to tell us how you would like us to contact you.
We may use your information to:
● Administer your membership
● Provide information to you
● Provide TSA Adviser support services to you and your family
● Inform you of news and events you may be interested in
● Inform you of TSC related research taking place
● Ask for your opinion or feedback
We may also use summarised non-personally identifiable information for the following purposes
● Campaigning and raising public awareness about TSC
● Understanding how you use our services and how we can make them better
● Developing new services for the TSC community
If you change your mind about whether you want to hear from us then you can always amend your preferences by logging into our website and updating your details. Alternatively, you can contact us at: firstname.lastname@example.org
We store your data on secure servers in the UK where it can be viewed only by our authorised staff, and partner organisations (for example, our IT support provider) with whom we have GDPR compliant contracts.
We take precautions to prevent the loss, misuse or unauthorised alteration of personal information you give us.
Access to your information is restricted to staff and partners who need it to perform their work. Sensitive information you give us is kept separate from other information and access is even more heavily protected. All staff who have access to your information have been successfully DBS-checked (Disclosure Barring Service) and are subject to our strict confidentiality agreements.
Transmitting information over the internet is can never be guaranteed as secure, and while we do our utmost to keep our systems and communications protected, we cannot make assurances that the security of your data in transit. Any data you transmit to us over the internet is at your own risk.
We are a charity with a small number of staff and rely on a number of trusted suppliers and partners working with us to provide a wide range of services to you. In order to provide you with these services we may need to share some of your personal information with our suppliers and partners from time to time so they can process it for us according to our instructions. In each case we will never share more information than is necessary to provide the service in question. For example, to send you a printed copy of SCAN magazine we need to give your address details to our print supplier.
When we send data to a third party working on our behalf we make sure the company we use has signed a GDPR-compliant data processing agreement with us, so that they are legally bound to take care of your data in the same that way we do. In addition, we may also have to pass on your personal information if we have a legal obligation to do so. We will never share your information with any other organisations for commercial purposes or other purposes that are incompatible with the aims and values of the TSA.
When you are using our secure on-line donation page or purchasing TSA merchandising products on-line you are going through to a partner company and the information you give such as your credit card number and contact information is provided to them so the transaction can take place.
Whenever you browse our website, read pages, or download information, the web server automatically records certain information about your visit from the computer or device you use to access our site. This tells us how many visitors come to our site, when they visit, how many pages they access, their internet browser (eg Microsoft Explorer or Firefox), their computer operating system (eg Windows XP) and the site they were on before they linked to ours (eg Google if they found us from a search engine). With this information, we can improve our site for all our visitors and make it more useful to you.
The TSA uses a number of social media platforms to communicate our news, invite input and feedback, raise awareness and campaign for people affected by TSC, their families and carers. There are many other great websites on the internet with useful resources and information relevant to the TSC community.
However please be aware that the TSA is not responsible for and has no control over information you or others submit, post or share on social media or other websites even where we link to them from our own website or they link to our website. When you use these sites you do so in accordance with the separate terms and conditions and policies of these sites.
You have the right to request copies of the personal information which we hold on you, and, details of how we use that information. The Tuberous Sclerosis Association (TSA) will always endeavour to keep accurate and up to date information on you but if you think any of the personal information we hold about you is not correct, you may also request that it is corrected.In relation to all of these rights, please email or write to us at: email@example.com
We will respond to your requests within all applicable timeframes (in accordance with the Information Commissioner’s Office guidelines). Please note that we will request proof of identity.
We regularly review and update this policy to make sure it is accurate and simple to understand. This policy was last updated in May 2018.
Please contact us if you have any questions about this policy or the information that we hold about you.
You can contact us by email at firstname.lastname@example.org or by post at:
The Tuberous Sclerosis Association, CAN Mezzanine, 32-36 Loman Street, LONDON SE1 0EH
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