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 0300 222 5737 between 9am and 5pm, Monday to Friday, or by email at fundraising@tuberous-sclerosis.org .

Find out more about the Fundraising Regulator on their website.

We regularly review and update this policy to make sure it is accurate and simple to understand. This policy was last updated in October 2019 .