Privacy Policy

The purpose of this privacy policy is to describe the types of information that we collect from you when you contact us or use our services and explain how we use this information.


What Information Do We Collect About You?
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
● Questions, queries or feedback you send us via email or the website
● Phone calls to us
● Surveys you participate in
● 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
● 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.
What We Use Your Information For?
We may use your information to:
● Administer your membership
● Provide information to you
● Provide TSC Advisor 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
● Fundraising
● Campaigning and raising public awareness about TSC
● Research
● Understanding how you use our services and how we can make them better
● Developing new services for the TSC community


Where your data is stored
We store your data on secure servers in the UK where it can be viewed by our authorised staff, volunteers and contractors.
Keeping your data secure.
We take our responsibilities very seriously and we have procedures and security features in place to try and keep your data secure once we receive it.
Access to your information is restricted to staff, volunteers, contractors 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 restricted.
All staff and volunteers with access to your information are suitably vetted and are subject to confidentiality agreements.
Transmitting information over the internet is generally not completely secure, and we can’t guarantee the security of your data in transit. Any data you transmit to us over the internet is at your own risk.
Sharing your information
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 but we will never share more 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.
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.
On-line donations and purchases
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.
Data Collected When You Visit Our Website
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 information does not identify you personally. It just 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.
Cookies on Our Website
A cookie is just a line of text and numbers that is created by our website and stored on your computer when you visit our site. The cookie does not collect or contain personal information about you and poses no security or virus risk to your computer. When you return to our site, the cookie associates your computer with the information that you gave us when you first visited or registered. It helps us evaluate how often visitors return to the site. Of course, you can still make full use of the site if you specifically choose to delete or not to accept the cookie on your browser.
Social Media and Other Websites
The TSA have embraced the many fantastic opportunities granted by social media as a platform to communicate, share our stories, keep in touch, raise awareness and campaign for TSC sufferers, their families and carers. Likewise 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 may 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.
Your rights
You can contact us to request a copy of any information we hold about you, ask us to correct or remove any inaccurate information or ask us to delete some or all of the information we have collected about you and your family.
Changes to Our Privacy Policy
We regularly review and update this policy to make sure it is accurate and simple to understand. This policy was last updated in September 2016.
How to Contact Us
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 or by post at:
The Tuberous Sclerosis Association, CAN Mezzanine, 32-36 Loman Street, LONDON SE1 0EH