Dystonia UK (The Dystonia Society) is committed to ensuring that your privacy, and personal data, is protected. We have created this privacy policy in line with The General Data Protection Regulation (GDPR), designed by the European Parliament, the Council of the European Union and the European Commission to strengthen and unify data protection for all individuals within the European Union (EU).

This privacy policy sets out how Dystonia UK (The Dystonia Society) uses and protects any information that you give Dystonia UK (The Dystonia Society) when you use this website (https://www.dystonia.org.uk); and:

  • What information/data we collect
  • How we process the information and how it is retained
  • How we use cookies on our website (cookies policy)

You can be assured that should we ask you to provide certain information by which you can be identified when using this website, it will only be used in accordance with this privacy policy. We also must stress that you as an individual have a right to complain to the ICO (The Information Commissioner’s Office) if you have an issue with how your data may have been handled.

What information we collect

We may collect the following information through this website:

  • Name
  • Home/work address
  • Email address
  • Telephone/mobile number(s)

What we do with the information

Any information you give will be available to Dystonia UK (The Dystonia Society) for reasonable use. We may use your information to provide you with the services, information or products that you request or for administrative purposes – however you can be assured that we will never pass on/sell your data to a third party.


We are committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online.

Technical information

Like most websites, our server gathers limited information about you during a session, including the IP address and domain name from which you are accessing the server and your browser configuration. This information is only used to help us improve the content, design and performance of the site, and is not linked to the identity of any individual user.

Our site uses cookies

Cookies are small pieces of information that are transferred to and stored by your browser on your computer.

In no circumstances do we collect any data that is not directly related to the use of the website (for example, we do not record other sites that you have visited).

The log files or any information they contain about your use of the site will not be made available to any third parties other than as anonymous usage statistics.

Links to other websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.

Controlling your personal information

As mentioned, we will not share your personal information to third parties unless we have your permission or are required by law to do so.

If you wish to request a copy of the information that we hold about you or wish to update or delete any information, please write to Victoria Wareham at: Dystonia UK, 3rd Floor, 89 Albert Embankment, London, SE1 7TP, or email: [email protected]

Cookies Policy

How we use cookies on our website

A cookie is a small file which asks permission to be placed on your computer’s hard drive. Once you agree, the file is added and the cookie helps analyse web traffic or lets you know when you visit a particular site.

Dystonia UK (The Dystonia Society) uses permanent cookies to enable basic web traffic analysis using Google Analytics.

We use Google Analytics to analyse the use of this website. This analysis shows us which areas of the site are popular and those that are not often visited which helps us to use our website resources in the most effective way. The information generated relating to our website is used to create reports about the use of the website. Google will store this information. Google’s privacy policy is available at: www.google.com/privacypolicy.html

These will remain stored on your computer until deleted, or until they reach a specified expiry date.

You can choose to accept or decline cookies upon first use of the website. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website.