Data Privacy

Dystonia Europe welcomes you warmly, and invites you to familiarise yourself with the following important information on how we protect the privacy of your data. The notes below give more detail on: what Dystonia Europe’s attitude is towards data privacy, how we protect your data, and what it means for you if you use our MyDystonia diary (subsequently called “MyDystonia”).

What is Dystonia Europe?

Dystonia Europe is an independent non-profit organisation registered in Brussels, Belgium and connecting people for dystonia. Dystonia Europe has 20 national member organisations from 17 countries which represent the interests of more than 500,000 European citizens and their families living with dystonia.

What is MyDystonia?

MyDystonia is an electronic diary accessible at or via the MyDystonia app from the Apple App Store, which makes it easy for dystonia patients to record and analyse the impact of the disease on their everyday lives. By answering pre-defined questions (e.g. core symptoms like overactive muscles, pain or impact on daily activities) the user is able to record a daily history of symptom severity and improvement in relation to treatment. The use of the MyDystonia electronic diary implies the use of personal information, including health data.

Why do we care about data privacy?

Protecting your privacy is of prime importance to us. Therefore we adhere to the statutory data privacy provisions as defined by the Belgian Commission for the Protection of Privacy. We want you to know when we will collect data, what the data is, and how we use it.

What is personal data?

Personal data reveal information about an identified or identifiable natural person (called the "data subject" in the Belgian Privacy Act). In other words, personal data are all data allowing for the identification of an individual. Personal data include an individual's name, a picture, a phone number, even a professional phone number, a code, a bank account number, an email address, a fingerprint, …

They do not only include data having to do with individuals' privacy, but also data having to do with an individual's professional or public life.

Only data about a natural (physical) person are taken into account, excluding data about a legal person or an association (civil or commercial corporations or non-profit organisations). Personal data means individual details on the personal or factual circumstances of a specific natural person. Anonymous data cannot be related to an identified or identifiable person and are consequently not personal data.

When and where is your personal data gathered and stored?

When you use MyDystonia for the first time, data is gathered for registration purposes. The latter includes your full name, email address, date of birth, city of residence, gender, area of interest present country of residence and information about your dystonia and treatment. Such data is required for the functioning of the app and the web portal. In the course of using the MyDystonia service, data is registered and stored that will be used for documenting the disease impact. The data is stored within the app and on our server, so that you can also use our web portal, as well as synchronise your data across various devices. The data will not be kept in a form which permits identification of individual persons any longer than necessary for the purposes for which the data were collected or for which they are further processed. Only after being anonymised, collected data may be shared with third parties for scientific research purposes (see section Use of anonymised data).

Data is transmitted via an encrypted connection (SSL) using state-of-the-art procedures and technology. If you send us an e-mail using the feedback function, only your e-mail address and the message itself are transmitted to us.

On the passing on of personal data to third parties

Dystonia Europe does not pass data to any third parties unless you have expressly given your consent to allow us to do so.

Use of anonymised data

Anonymous data cannot be related to an identified or identifiable person and are consequently not personal data. Anonymised data is gathered for analysis to improve the usability of Mydystonia as well as for medical research purposes related to dystonia.

For analytical purposes we use Google Analytics in our applications, an analysis service of Google Inc. ("Google"). The anonymised information gathered by Google Analytics on your use of this website is usually transferred to a server of Google in the USA and saved there. Google will use this information to evaluate your use of the website, to compile reports on the website activities for the website operators, and to provide further services associated with the use of the website and the Internet. Google will also, if applicable, transmit this information to third parties, if such action is statutorily required or when third parties process such data on behalf of Google. Google will never associate your IP address with other data of Google. Your IP (Internet Protocol) address is the electronic numerical identity label attached to an individual device such as a computer, and is used for internet communications. By using this website you declare that you agree to the processing by Google of the data obtained about you, in the manner detailed and for the purposes specified above. You can revoke your consent to the recording and use of your IP address by Google Analytics at any time, which will take effect from the date of revocation. Further information can be found at

Anonymous data may be shared with third parties for scientific research purposes with the clear intention to improve dystonia therapy and the quality of life of patients living with dystonia.

The right to receive information and right to revoke permission

You can request immediate information on any data stored about you or any alias allocated to you at any time, free of charge. Moreover, you have the right to revoke permission for further use of your personal data in future at any time. For that purpose you need to provide valid evidence that it is your data that is concerned. Dystonia Europe reserves the right to provide the requested information electronically. In either case, please contact us at: e-mail:

The organisation designated as "controller" as defined by the Belgian Commission for the Protection of Privacy:

Dystonia Europe
 Square de Meeus 37 – 4th Floor
 1000 Brussels,

Tel: +46 739 98 49 61

Reservation of the right to make amendments

Dystonia Europe reserves the right to amend this data privacy statement at any time, while adhering to the applicable legal requirements.

Brussels, March 2015

Site notice

Dystonia Europe IVZW 
Square de Meeus 37 – 4th Floor 
1000 Brussels, 

Tel: +46 739 98 49 61

Executive director: Monika Benson 

President: Merete Avery

Legal Notice

 All rights to the contents of these websites are reserved. This also applies to rights to brand names and logos.

Dystonia Europe has checked the pages linked with this website prior to including a link thereto and found no illegal contents on the linked pages. However, Dystonia Europe has no influence or responsibility whatsoever for the current or future design and content of linked pages.