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The TSA’s policies



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 2018.

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.

The charity

Tuberous Sclerosis Association is a registered charity:

  • England and Wales No. 2900107
  • English Registered Charity Number. 1039549
  • Scottish Registered Charity No. SC042780

Our registered address is: The Tuberous Sclerosis Association, Unit 56, 1 Emma Street, London, E2 9FP

Legal compliance

TSA takes data protection very seriously. It is required to adhere to the requirements of the Data Protection Act 1998, the General Data Protection Regulations 2018 (GDPR), all other related privacy laws and any codes of practice issued by the Fundraising Regulator (FR) or the Information Commissioners Office (ICO). TSA’s intention is to be compliant, user friendly and to ensure its supporters only receive information in which they are interested. Unless stated otherwise, TSA is the data controller in respect of all data it collects on this Website or otherwise. This means that TSA is responsible for full legal compliance.

By visiting our website, social media pages, services (including phone and email) or providing your information to us, we will collect and use your information in the way(s) set out in this policy. If you do not agree with this policy, please do not use our sites, social media pages or services.

What information does the TSA collect about me?

We collect three kinds of information:

1.Non-personal information such as IP addresses (the location of the computer on the internet), pages accessed, and files downloaded. This helps us to understand how many people use our websites, how many people visit on a regular basis and how popular/useful our web pages are. This information doesn’t tell us anything about who you are or where you live.

2.Personal information. We will ask you for information in order to provide you with the services requested, for example to send you information or process a donation.

  1. Sensitive personal information or special category data. We may ask you for information about your health so that we can provide you with relevant information and support or in order to support your safe participation in an event. We may also collect this information if you make the information public or if you tell us about your experiences relating to TSC (for example, if you agree to share your story with us). We only collect this information with your consent.

Under 16s

We are committed to protecting the privacy of the young people that engage with us. If you are under 16 and would like to get involved, please ensure you have consent from a parent or guardian before you provide your personal information to us. We do not send any marketing communications direct to children under 16.

Vulnerable supporters policy.

We are committed to protecting vulnerable supporters and follows the guidance issued by the Fundraising Regulator and Institute of Fundraising regarding treating donors fairly.

We believes this helps to support staff and volunteers who come into contact with supporters, enabling them to provide high-quality customer care and ensuring anyone donating to TSA is in a position to make a free and informed decision.

How we collect your information

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). We collect information about you in the following ways:

Information you give to us directly, for example when you:

  • Sign up to take part in or attend one of our fundraising or support events
  • Register with and buy products on our shop
  • Make a donation or tell us about your fundraising plans
  • Request information from our advisor team, for example factsheets
  • Contact our support team, when you may choose to provide details, including details of a personal nature in particular about you or someone else’s health
  • Choose to share your story with us
  • Take part in surveys, questionnaires or get involved with our campaigns
  • Volunteer with us or apply to work with us
  • Sign up to our e-newsletter
  • When you visit our websites, we collect technical information such as the IP address you use to visit the website, your browser type and version
  • Contact us or become involved with us in any other way not listed above.

Information from third parties

We may also receive information about you from third parties if you have given them permission to share this information and indicated that you wish to support the TSA, for example, if you set up a fundraising page for us with JustGiving or Virgin money giving or sign up to a challenge with a partner organisation or enter an independently organised event like the London Marathon.

If you have been named as the Executor on a Will, we may receive your details in order to administer a Gift left to us in that will.

Information about other people. If you provide TSA with personal data relating to any person other than yourself, you must ensure, before you do so, that they understand how their personal data will be used and that you are authorised to disclose it to TSA, and to consent to its use on their behalf.

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 what we’re doing and opportunities to support you or for you to support our work.

We will mainly use the information we collect about you to:

  • Provide you with the services, products or information you asked for.
  • Administer your donation or support your fundraising, including submitting your details to HMRC to claim Gift Aid if applicable.
  • Administer your participation in an event.
  • Keep you up-to-date with the impact of your support and to ask for financial and non-financial support.
  • Manage our research grants, including the peer review process.
  • Support and further our mission, for example if you have shared your story or given us consent to use your photo, we may use this in marketing or promotional materials.
  • Carry out any obligations arising from any contracts entered into by you and us.
  • Process a job or volunteering application.

Keeping a record of your relationship with us:

We record contact we have with you, so we have a clear understanding of our relationship, how you’ve supported us or have been supported by us in the past. We may also collect and retain your information if you send us feedback about our services, give us a compliment or make a complaint.

Understanding how we can improve our services, events, products or information

We believe it’s important to make sure that all of our services are the very best they can be, which is why we evaluate them. Once you’ve used one of our services, taken part in an event, received information or bought a product, we may get in touch to ask you about your experience. You don’t have to take part but it’s really valuable to help us improve in the future.

Understanding our supporters and working more effectively

We are committed to providing everyone who gets in touch with us with the very best experience, providing you with timely and relevant communications and using our resources effectively.

To do this, we may use profiling techniques to provide us with general information about you, which may include geographic, demographic or other information relating to you to better understand your interests and preferences. By doing this it allows us to understand the background of the people who support us and helps us to make the right requests. Importantly, it helps us to raise more funds, sooner, and more cost-effectively, than we otherwise would.

Communicating with you

If you have provided us with your postal address we may send you mail, including SCAN magazine newsletter, which will include updates on our work – the research we’re funding, the information and support services we offer and our campaigning work. We may also contact you about fundraising, events and trading. We do not ask for consent to write or call you about these things, because, as a charity, each of these activities is fundamental to how we work, so we have a legitimate interest to contact you. However, you will also have an option to opt-out of receiving marketing communications by post or phone.

We will only send you marketing communications by email if you have consented to receive these. You can unsubscribe at any time by clicking on the link in the email. Our mass email service allows us to track who has opened our e-newsletter and what links have been clicked on. This allows us to monitor what information is most useful to improve our content and information in future.

Opting out

You can always amend your preferences by logging into our website and updating your details or you can contact us at any time on or call on 0300 222 5737 to opt-out of any or all forms of marketing communication.

You can unsubscribe from receiving electronic messages by following the “unsubscribe” instructions included in our communication.

Please note that, even where you opt-out of marketing communications, we may still send you non-marketing communications (for example, event information relating to an event you have signed-up to, or information about any on-going donation you are making to the charity).

The accuracy of personal information is determined by the accuracy of the information you supply to us. If you have an ongoing relationship with the Charity, we encourage you to notify us when there are changes in your personal details, so that we can keep our records up to date. In addition, we will pro-actively take steps to do this from time to time.

Where is my data is stored?

When you give us your details, you agree to us recording your details on our secure database, so we can provide you with the best possible service every time you contact us. We store your data on secure servers in the UK ,access to this system is limited and there is restricted access to data based on a person’s role in the organisation. Data can only be be viewed only by our authorised staff, and partner organisations (for example, our IT support provider) with whom we have GDPR compliant contracts.

Our third-party suppliers store data in the EU, with the following exception/s:

Our online events registration supplier, Eventbrite, who store data in the USA.

All paper records are stored on premises at our offices. These offices are securely locked when no members of staff are present and access is restricted and monitored during the working day.

How do you keep my information secure?

In line with the principles defined in the Data Protection Act 2018 and the General Data Protection Regulation, TSA will ensure that personal data will be processed in ways that are:

  • Lawful, fair and transparent
  • Collected for specific explicit and legitimate purposes
  • Adequate, relevant and limited
  • Accurate and up-to-date
  • Not kept for longer than necessary
  • 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.

These include:

  • Banks and payment providers – to authorise and complete payment transactions;
  • Organisations within the payment card industry to help prevent online fraud;
  • Law enforcement bodies in order to comply with any legal obligation or court order and, where we are otherwise requested to provide information, we may provide it but only in accordance with applicable privacy and data protection laws;
  • HM Revenue & Customs, but only if we need to authorise claims for Gift Aid or other forms of tax efficient ways of giving; and
  • Organisations linked to our charitable activities such as the Association of Medical Research Charities

We may also provide information to third party service providers who process information on our behalf to help run some of our internal business operations including email distribution, IT services and customer services, or in relation to this website, such as card payment providers. Where we use service providers, we will enter into appropriate contracts to ensure that we are able to exercise control over their access to, and use of, your personal information.

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.

What happens when I make a donation or buy something from the TSA?

If you use your credit or debit card to donate to us, pay for a registration or make a purchase over the phone, we will ensure this is done securely and in accordance with the Payment Card Industry Data Security Standard. We do not store your credit or debit card details at all following the completion of your transaction. All card details are securely destroyed once the payment or donation has been processed.

All purchases and donations completed online are handled securely by World Pay or PayPal and we do not receive your card details.

Cookies on Our Website

A cookie is a small data file that is created by our website and stored on your computer when you visit our site. The use of cookies is standard across most websites. We have a visible banner to remind users that by using our website you consent to our use of cookies. 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. You can still make full use of our website if you choose not to accept the cookie on your browser, or to delete it at any time after having accepted it.

For more information read our cookies policy.

What happens when I use social media platforms like Facebook and Twitter used by the TSA?

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.

Your rights

Where we are using your personal information on the basis of your consent, you have the right to withdraw that consent at any time.

Right of Access –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.

Any person whose personal information is held or processed by TSA has the right to know:

  • What information we hold about them.
  • How to gain access to this information.
  • How to keep it up to date.
  • What the charity is doing to comply with the Data Protection Act 1998 and EU General Data Protection Regulation.
  • Individuals have a right to access certain personal data being kept about them, either physically or digitally. Anyone who wishes to exercise this right should apply, in writing, to the Data Protection Officer at the address below. The Charity will respond within one month, providing that the request includes appropriate contact details, proof of identity from the individual and we can validate the request.
  • Right to be Informed – You have the right to be told how your personal information will be used. This policy document, and shorter summary statements used in the Charity’s communications, are intended to be a clear and transparent description of how your data may be used.
  • Withdraw consent to other processing – Where the only legal basis for processing your personal data is that we have your consent to do so, you may withdraw your consent to that processing at any time and TSA will have to stop processing your personal data. Please note, this will only affect a new activity and does not mean that processing carried out before you withdrew your consent is unlawful.
  • Right to Object – You have an absolute right to stop the processing of your personal data for direct marketing purposes. You can exercise this right at any time and can update your preferences yourself on our website or contact us to do it for you. See section ‘Updating and correcting personal data’ above for details.
  • Right of Rectification – If you believe YAA’s records are inaccurate you have the right to ask for those records concerning you to be updated. See section ‘Updating and correcting personal data’ above for details.
  • Right to restrict processing – In certain circumstances you may be able to require us our processing of your personal data. For example, if you consider the data  TSA holds to be inaccurate and we disagrees, then processing may be restricted until the accuracy of the data has been verified.
  • Right of Erasure – Where we have  no lawful basis for holding onto your personal data you may ask that it is deleted under your right to be forgotten. In many cases we would recommend that it suppresses you from future communications, rather than data deletion.
  • Right to Data Portability – In limited circumstances you may be entitled to have the personal data you have provided to us sent electronically to you for you to provide to another organisation.

In relation to all of these rights, please email or write to us at: The Tuberous Sclerosis Association, Unit 56, 1 Emma Street, London E2 9FP, marked ‘FAO Data Protection Officer’


If you are unhappy at any time about the way we process your personal information, please contact the Data Protection Officer at the address above, who will investigate your concerns.

If you remain unsatisfied, you have the right to lodge a complaint with the Information Commissioner’s Office:

Information Commissioner’s Office

Wycliffe House

Water Lane




Tel: 0303 1231113

Website: Top of Form

Keeping our Privacy Policy up to date

We regularly review and update this policy to make sure it is accurate and simple to understand. This policy was last updated in August 2018.


Last reviewed: 03 October 2019

The site has been created primarily for visitors in the UK and Northern Ireland.

The information contained on this website is intended for information purposes only. It is not intended, nor does it, constitute medical or other advice. We do not promote or recommend any treatment, course of action or institution and we do not accept advertising on our site. The website content is not influenced by any sponsors or funders.

This website is not a substitute for professional medical advice. Always seek your own medical advice before taking, or refraining from taking, any action or treatment.

Every effort is taken to ensure the information’s accuracy but no guarantee of accuracy can be given.

Medical information changes rapidly. We make efforts to update the content on the site but some information may be out of date.

We do not knowingly reproduce inaccurate or libellous material. Individuals and organisations referred to by us do not necessarily endorse this reference.


The TSA freely gives permission to reproduce original, unmodified material from our website for non-commercial purposes. Please credit this: “Reproduced from the Tuberous Sclerosis Association” with a link to our website ( Permission to reproduce other materials must be solicited from the original copyright owners.

External Links

All links from this website are provided for information only. We cannot accept responsibility for the sites linked to or the information found there. A link does not imply an endorsement of a site.

Opinions from third-parties

All views posted on this website, included in films, audio files and personal stories, are the views of the individual and not the views, policy or advice of the TSA. Any reference to third party organisations, their product/s or service/s does not imply endorsement by the TSA.

Website access and safety

We cannot guarantee that use of this site will be uninterrupted or error-free, or that the site and its servers are free of computer viruses, trojans or glitches.

Website contact details

For comments or questions about this website contact us by emailing, telephoning 0300 222 5737 or writing to The Tuberous Sclerosis Association, Unit 56, 1 Emma Street, London, E2 9FP.


Tuberous Sclerosis Association’s Vulnerable Supporter Policy

Our generous supporters make our work possible and are central to us achieving our mission  is to provide help for today and a cure for tomorrow.

This policy relates to all the relationships between TSA and our supporters, regardless of the financial benefits, and extends to include any third parties we may work with who interact with supporters. Third party agencies working on behalf of TSA are considered to be an extension of us and are therefore expected to align with our values and treat all our supporters with the integrity and respect they deserve.

TSA’s commitment

All fundraisers (both at TSA and third-party agency partners) should be alert to indicators of potential vulnerabilities in every interaction they have with supporters. We should always abide by our values of respect, integrity and accountability, and be open, honest and transparent with all our supporters to ensure they fully understand what their support involves. We will always strive to provide them with the best possible experience in their relationship with TSA, and recognise that our supporters are key to us carrying out our work.

Our commitment to our supporters and as a member of the Fundraising Regulator, means we will adhere to the Code of Fundraising Practice Requirements (1.2 e):

Fundraisers MUST take all reasonable steps to treat a donor fairly, enabling them to make an informed decision about any donation. This MUST include taking into account the needs of any potential donor who may be in a vulnerable circumstance or require additional care and support to make an informed decision.

  1. Fundraisers MUST NOT exploit the credulity, lack of knowledge, apparent need for care and support or vulnerable circumstance of any donor at any point in time.
  2. If a fundraiser knows or has reasonable grounds for believing that an individual lacks capacity to make a decision to donate, a donation MUST NOT be taken.
  • A donation given by someone who lacked capacity at the time of donating MUST* be returned. (this is a legal requirement defined by law).

What is vulnerability?

The TSA recognises that vulnerability is complex and changeable and may, at some stage in life, affect any individual. If an individual lacks the mental capacity to make an informed decision, then they are in a vulnerable situation. The Mental Capacity Act 2005 states that this can be defined as an impairment of the functioning of the brain leaving that person unable to make a decision, for example dementia.

The Fundraising Regulator guidance Treating Donors Fairly states ‘an individual does not have to have any medical, physical, or mental condition to be in a ‘vulnerable circumstance’. Something could have happened in their life that makes things difficult for them, meaning that it is harder for them to make decisions, or they are experiencing particular stress or anxiety. The TSA therefore understands that vulnerability can be a temporary situation defined by significant life events, such as times of extreme stress and/or anxiety.

It is important for all staff and representatives of TSA to remember that there is a wide range of potential vulnerabilities, which can affect different people in different ways. It is important to consider each supporters circumstance individually and refrain from making judgements.

The TSA also recognises that there are times where an individual may have capacity to make a decision, but circumstances mean they may require extra support in making that decision e.g. if someone is bereaved.

Identifying someone in a potentially vulnerable situation

Examples of situations which could lead the TSA to believe that an individual does not have the mental capacity to make an informed decision, is in a vulnerable circumstance, or needs additional support could include:

  • Physical and mental medical conditions
  • Disability
  • Learning difficulties
  • Times of stress or anxiety (e.g. bereavement, redundancy)
  • Financial vulnerability (where a gift from a donor may impact on their ability to sufficiently care for themselves or leave them in financial hardship)
  • English not being the donor’s first language
  • Influence of alcohol or drugs.

Due to its nature, it is not possible to provide a comprehensive set of indicators, so these serve as guidance and fundraisers are advised to always remain alert to the potential for vulnerability.

If a fundraiser has grounds to believe a supporter is in a vulnerable situation, or lacks the capacity to make an informed decision, then the interaction with the supporter should be ended in a polite manner protecting their dignity.

When would TSA not accept a donation

This policy only refers to situations where the supporter may be in a vulnerable circumstance, and no other situations where refusing or refunding a donation may need to be considered, for example, if a supporter has changed their mind.

When TSA has reasonable grounds to believe that a supporter lacks the mental capacity to make an informed decision, including temporary circumstances, about their giving we should not accept the donation.

When TSA has reasonable grounds to believe an individual has the capacity to make a decision, but might need additional support in doing so, TSA will not accept the donation at that moment. It may be considered appropriate to send the supporter a form and advise them to discuss their donation with friends and family before returning it.

When TSA should return a donation

If a donation has been made and it is found that at the time of donating the supporter lacked the capacity to make an informed decision about their giving, the donation is deemed invalid and should be returned.

We’re here to help If we can be of any assistance, or if you would like more information about this policy, please contact our team on 0300 222 5737, or email us at or write to Tuberous Sclerosis Association, Unit 56, 1 Emma Street, London, E2 9FP.


1. Legal

The Tuberous Sclerosis Association is a UK registered charity (Registered Charity Number 1039549 (England & Wales), SC042780 (Scotland)). The items sold here are for are non-primary purpose trading and are sold to raise funds for the TSA.

2. Processing your order and payment

2.1 We accept payment by PayPal. Cheques are accepted for postal orders only and should be made payable to The Tuberous Sclerosis Association. Cheques should be crossed and have your address (including postcode), number and card expiry date written on the back. Please do not send cash through the post. CAF cheques are acceptable only where you are solely making a donation and not if purchasing any product, including alternative gifts. These can be posted to us at  The Tuberous Sclerosis Association, Unit 56, 1 Emma Street, London, E2 9FP.

2.2 All prices of products and delivery charges shown within the catalogue brochure and on our website are inclusive of VAT and are correct at the time of printing.

2.3 You can contact a member of our fundraising team to talk through any product or purchase you’ve made. Calls are charged at a standard UK landline rate and staff are available from Monday – Thursday, 9am-5pm.

3. Goods

3.1 All orders will be subject to our acceptance of the order

3.2 Due to popular demand and occasional limited availability, our products may sell out quickly. If an item you have ordered is not available you will be notified.

3.3 Although we aim to describe and measure items as accurately as possible, occasionally colours, design and materials may vary slightly from those illustrated.

3.4 The donation amounts of our alternative gifts suggest how the Tuberous Sclerosis Association could spend your money. However your donation helps the full range of our work at the charity and will be used where the need is most urgent.

3.5 If items within your order are permanently out of stock, we may at times substitute your item for a similar product of equal or greater value. If you do not wish to accept this substitute you may return it to us and we will issue you with a full refund.

4. Delivery

4.1 Your order should arrive within 21 days where products are in stock.

4.2 We would always advise you to order early to avoid disappointment, particularly during peak times such as Christmas and summertime

4.3 We cannot accept liability for out of pocket expenses or other costs incurred due to failed or delayed deliveries or breach of our obligations, if the delay or breach is due to acts of God, civil commotion, riots, strikes, malicious damage, floods, drought, fire, flood, legislation, failure of ISP or telecommunications provider or other cause beyond our reasonable control. This does not affect your statutory rights.

4.4 A postage and packing fee is not applicable for donations or the purchase of alternative gifts where other items are not included.

4.5 For overseas deliveries, or those to the Highlands and Islands, please call our fundraising team for full delivery charges on 0300 222 5737.

5. Cancellation and refunds

If you wish to cancel your order, or you are unhappy for any reason please contact our fundraising team on  0300 222 5737. If you receive damaged products or we send a product in error or we supply you with a substitute for a product which is unavailable and you do not want the substitute please call the fundraising team. You may return the products and a replacement or full refund will be provided, including the costs of returning the product to us.

If you cancel your order, or change your mind once you have received your order, we will refund the relevant part of the purchase price for that item. The original postage and packing charge and any subsequent postage fees incurred in returning the item will not be refunded. Until the product is received by us, you must take reasonable care of it and ensure that it is returned to us in a re-saleable condition.

Full returns instructions can be found on the order’s delivery note. Please tell us why you are returning the goods and what you would like as a remedy. If you wish to return non-faulty goods, this should be done within 14 days of receipt. We offer a money-back guarantee on products returned in a good, unused condition. This does not affect your statutory rights.

6. Data protection

The information provided by customers will be held by the Tuberous Sclerosis Association for processing and administrative purposes in accordance with the Data Protection Act 2018.

7. Gift Aid

Completing the Gift Aid declaration enables the Tuberous Sclerosis Association to reclaim the tax on all donations made in the future and over the past 4 years.  This will give the charity an extra 25 pence for every £1 donated.

To qualify for Gift Aid you must pay an amount of Income Tax and/or Capital Gains Tax at least equal to the tax that all charities and Community Amateur Sports Clubs will reclaim on your donations in the tax year. You understand that other taxes such as VAT and Council Tax do not qualify.

You can cancel the declaration at any time by notifying the charity. From the date of cancellation Gift Aid will not be applied to any donation you make. You may withdraw your permission for us to reclaim the value of the tax paid on your donations within 30 days or at any time subsequently if you wish. Please let us know if your tax status, name or address changes while the declaration is in force. Thank you.

8. Customer services

If you have a query concerning your order please call our fundraising team on  0300 222 5737, email or write to: The Tuberous Sclerosis Association, Unit 56, 1 Emma Street, London, E2 9FP.

Should you have any feedback on our online shop or the service that we offer, please write to: Tuberous Sclerosis Association, Unit 56, 1 Emma Street, London, E2 9FP or email

For more information or to make a donation please visit

You can let us know if you suspect that a user is breaking our Community Guidelines, or if you have any concerns about the use or the participation in the community, please contact us.

If you ignore or fail to comply with our Community Guidelines we reserve the right to block you from accessing TSA public platforms in the future.


Our fundraising promise and your privacy

At the Tuberous Sclerosis Association, we hugely value the support of people like you, so your personal data and privacy is extremely important to us.

We promise to respect any personal data you share with us, keep it safe and not do anything you wouldn’t reasonably expect with it.

Our work is entirely reliant on voluntary donations which means we do have to ask for money. When we do, we always try to ask responsibly and respectfully.

Our fundraising promise to you

We will never:

  • sell your data to another organisation
  • share or sell your details to other charities or third parties for marketing purpose. We will only share details with those working on behalf of the TSA

We will always:

  • do our best to keep your personal details safe
  • listen to you, and ensure that we communicate with you in the way that you want
  • treat you fairly and reasonably
  • act with transparency – if you have questions, we will answer them in an open and honest way
  • be accountable – if you don’t like what we’re doing we want to hear from you

Fundraising and use of supporter details

The safety and appropriate use of supporters’ data is important to us and we will never share or sell personal details to another organisation for their own use.

As a founding charity of the Fundraising Regulator, we follow the Code of Fundraising Practice guidelines, on best practice and are compliant with current data protection legislation.

Building profiles of supporters and targeting communications

At the Tuberous Sclerosis Association, we aim to make sure that the information we send to you is relevant and timely. We also wish to use our resources effectively, something supporters tell us is important too. We use profiling techniques because they help us to make appropriate fundraising requests to supporters and importantly, enable us to raise more funds sooner, and more cost-effectively, than we otherwise would.

A profile is primarily based on information that you have given through previous interactions with us. This may include broad information relating to you, such as geographic and socio-economic data (such as  age, postcode), in order to have a better understanding of your potential interests and preferences. This helps us to only contact you with the most relevant communications.  If you have made a gift to us, we would bear in mind its value and your gift patterns to help us be as relevant to you as we can. For example, if you have made a donation towards our research work we will prioritise sending you further information relating to our scientific research.

If you have any questions or concerns about how we communicate with you, how we use your data or would like to change any of your preferences in these areas, please call us on 0200 2225737 between 9am and 5pm, Monday to Friday, or by email at .

Find out more about the Fundraising Regulator on their website.



Before registering for this event, you must be fit to participate and should seek medical advice if appropriate. You should inform the event organisers of any relevant existing medical conditions and any arising after registration that might affect your participation.

Your safety is of paramount importance. Please ensure that you follow all safety instructions and training procedures when participating in events.

All reasonable steps have been taken to eliminate the chance of injury but there is a certain minimal risk in every activity and you should withdraw from the event if you have any doubts. TSA, its employees, agents and volunteers accept no liability whatsoever to participants or spectators in respect of any loss, damage or personal injury which may be sustained in the course of this event other than personal injury (including death) caused by our negligence. Liability cannot be accepted for any damage, injury or loss arising from the negligence of participants (whether through failure to observe the rules of the event or otherwise).


Minimum ages are specified for some events. These assume an average level of competence and maturity. However all participants under 18 require parental consent and it is for parents to decide if the event is appropriate for their child, seeking additional information, if necessary.

We reserve the right to prohibit individuals from taking part, and will do so if participants under 18 have failed to provide evidence of parental consent.


Registration varies for events and is non-refundable. We ask all participants to raise a minimum amount of sponsorship for TSA, as outlined on the event description and supporting material. When the event is a team effort, Team Leaders are responsible for their team’s fundraising target.


Photographs may be taken of you during the event which may be used to publicise future events and the work of the charity generally including on our web site.

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Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.