International TSC Research Conference 2021 

Privacy Policy

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.

The purpose of this privacy policy is to describe the types of information that we collect from you when you register for the International TSC Research Conference and explain how we use this information.

What information will the TSA collect about me?

We will collect personal and professional information that you give us when you register to attend the International TSC Research Conference 2021 or sign up to receive information from us about this event.

Why do you need my details and how do you use them?

The main reason we need your personal details is to enable us to communicate with you and keep you informed about the International TSC Research Conference and other research-related 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 to receive information about the Conference, when you register to attend the Conference, or when you speak or email to a member of staff.

We may use your information to:

• Send you update emails and e-newsletters about the International TSC Research Conference.
• Register you to attend the virtual International TSC Research Conference
• Contact you if we have any queries or need further information to support your attendance at the International TSC Research Conference.
• Ask our third party supplier the Royal College of Physicians (online platform supplier) to send your personal joining link and access code for the International TSC Research Conference virtual conference platform.
• Send you a link to download the electronic conference programme book.
• Send you e-blasts with information about the Pharmaceutical Symposia that will be taking place at the Conference (if you are a healthcare professional or a prescriber (Germany only)).
• Send you feedback forms so that we can learn from your experience of attending the conference and use your feedback to improve our future events and activities.
• Send you information so that you can access Conference sessions for 30 days after the event has taken place.
• Inform you of other research-related news and events that you may be interested in.

What if I don’t want you to use my details anymore?

If you change your mind about whether you want to hear from us, then you can always amend your preferences by contacting us at: admin@tuberous-sclerosis.org

Where is my data is stored?

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.

How do you keep my information secure?

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.

Do you pass my details on to any other organisations or individuals?

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 joining link to the virtual conference platform and a unique password to access the event we will need to share your contact details including your email address with third party supplier the Royal College of Physicians (online platform 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. When we send data to an event sponsor or event exhibitor we make sure that each company 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 way that 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.

Your rights to access your data

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: admin@tuberous-sclerosis.org.

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.

If you wish to make a complaint

If you have any queries or concerns about your data, how we are handling it, wish to ask us not to process your data or wish to ask us to erase your data, please contact the TSA’s Joint Chief Executive Louise Fish (louise.fish@tuberous-sclerosis.org).

If you remain unsatisfied, you have the right to lodge a complaint with the Information Commissioner’s Office:  ICO, Wycliffe House , Water Lane, Wilmslow, Cheshire, SK9 5AF; telephone: 0303 1231113; website: www.ico.org.uk/global/contact-us.