Privacy policy

This Privacy Policy describes the policies and procedures of Dystonia Europe (“we”, “our” or “us”) on the collection, use and disclosure of your information on (the “Site”) and the services, features, content or applications offered by Dystonia Europe (collectively with the Site, the “Services”).

Dystonia Europe receives information about you from various sources, including:

  1. your use of the Services generally; and
  2. from third party websites and services.

When you use the Services, you are consenting to the collection, transfer, manipulation, storage, disclosure and other uses of your information as described in this Privacy Policy.

What Information Does Dystonia Europe Collect?

If you submit personal information through one of the following features of our Site, it may be collected and stored by the team that administers the Services:

  • enquiries sent in through the ‘contact us’ form
  • survey forms
  • mailing list subscription forms

For a copy of any information collected about you through any of the above methods, please email with the URL of the form.

Following a link to another website

When you go to another website, read the privacy policy on that website if you want to know what it does with your information. Dystonia Europe does not pass on any of your personal information to other websites or sold to any third party.

Dystonia Europe Surveys

The Dystonia Europe can sometimes carry out research surveys with the aim of collecting data to support its aims and objectives to improve the lifes of people with Dystonia. We will never ask for personal information that can be used to identify you. We may sometimes ask for an email address and name solely for the purpose of facilitating your access the survey. This information will not be sold, given away or used for any other purpose other than facilitating your access to the survey.

Dystonia Europe may sometimes link to surveys being carried out by third parties. We do not have control over whether these survey sites will collect or use Personal information.


Cookies are small pieces of text stored as a file on the computer’s hard drive. They are not computer programs, and they cannot be executed as code. They cannot be used to disseminate viruses or access the hard drives – a cookie cannot read other information saved on the hard drive, or get a user’s e-mail address etc. They only contain and transfer to the web server as much information as the users themselves have disclosed to a certain web site.

Cookies are used by your browser and by most websites to help personalise or improve your web experience. If you wish to restrict or block the cookies which are set by Dystonia Europe websites, or indeed any other website, you can do this through your browser settings. Please be aware that restricting cookies may affect some of the functionality of the Dystonia Europe website although the majority of the site will still be accessible to you.

You can find more information about deleting and controling cookies from the website.

Dystonia Europe will not use cookies to collect personally identifiable information about you.

Google Analytics

Dystonia Europe uses Google Analytics, a web analytics service provided by Google, Inc.

Google Analytics sets a cookie in order to evaluate your use of the Site and compile reports for us on activity on the Site to help us understand how visitors engage with the Site and track visitor interactions. Google Analytics collects information anonymously and without identifying individual visitors.

Google stores the information collected by the cookie on servers in the United States. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. By accessing the Site, you consent to the processing of data about you by Google in the manner and for the purposes set out above.

Analytics uses its own cookie to store information, such as what time the current visit occurred, whether the visitor has been to the site before, and what site referred the visitor to the web page. To disable this type of cookie, some browsers will indicate when a cookie is being sent and allow you to decline cookies on a case-by-case basis. In addition to declining cookies, you can also install the Google Analytics Opt-out Add-on in your browser, which prevents Google Analytics from collecting information about your website visits.

Google Analytics sets cookies to help us accurately estimate the number of visitors to the website and volumes of usage. This to ensure that the service is available when you want it and fast.

The table below explains the cookies we use and why.

Name Expires Purpose
_utma 2 years Google Analytics randomly generated numberWe use Google Analytics to monitor traffic levels, search queries and visits to this website.Google Analytics stores IP address anonamously on its servers in the US, and neither CIVIC or Google associate your IP address with any personally identifiable information.

These cookies enable Google to determine whether you are a return visitor to the site, and to track the pages that you visit during your session.

_utmb 30 minutes
_utmc This cookie is deleted when browser is closed.
_utmz 6 months


Dystonia Europe Sharing Tools

Dystonia Europe use a number of social media tools in the form of ‘share’ buttons to enable users of the site to easily share articles with their friends through a number of popular social network. As a result, when you visit a page with content embedded or social media buttons and content, you may be presented with cookies from these websites. These websites are not controlled by Dystonia Europe. By using these links you accept the privacy policies of these websites.

These sites may set a cookie when you are also logged in to their service. Data may then be collected by these companies that enables them to serve up adverts on other sites that they think are relevent to your interests. If you do not use such platforms then our site will not place these cookies on your device.

YouTube cookies

We sometimes embed video content from our official YouTube channel using YouTube’s privacy-enhanced mode. This mode may set cookies on your computer once you click on the YouTube video player, but YouTube will not store personally-identifiable cookie information for playbacks of embedded videos using the privacy-enhanced mode.

What happens when there are changes to this Privacy Policy?

If this privacy policy changes Dystonia Europe will update this page. You should visit this page regularly so you know:

  • what personal information Dystonia Europe collects
  • how Dystonia Europe uses your personal information
  • when (if ever) Dystonia Europe shares your personal information with someone else

What if I have questions or concerns?

If you have any questions or concerns regarding privacy using the Services, please send us a detailed message to: We will make every effort to resolve your concerns.