Privacy Policy

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 website Dystonia Survey (subsequently called “Dystonia Survey”).

What is Dystonia Europe?

Dystonia Europe is an independent non-profit organisation registered in Brussels, Belgium and connecting people for dystonia. Dystonia Europe has 22 national member organisations from 18 countries which represent the interests of more than 500,000 European citizens and their families living with dystonia.

What is Dystonia Survey?

Dystonia Survey is a website aimed at hosting various surveys concerning dystonia, treatment, quality of life etc. It is accessible at
Dystonia Europe works to support researchers in moving forward research that could lead to future treatments and cures for dystonia. Help us by filling out our short surveys on treatment satisfaction, quality of life, access to treatment etc. Such personal dystonia experience and input can benefit the dystonia community today and in the future.

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 register at Dystonia Survey, we only ask for name and e-mail address and this data is gathered for registration purposes only.
Surveys are always anonymous unless you participate in a “private survey” where invitations have been sent out. In that case we only know that a specific person has taken the survey while all answers are always anonymous.
Data is transmitted via an encrypted connection (SSL) using state-of-the-art procedures and technology. All information is stored on servers privately owned by Dystonia Europe.

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.

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.

All information in relation to a specific survey, such as the answers given, will be shared with the owner of the survey. This will always be shared as anonymous data and can never be used to identify someone.

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, September 2017

Site notice Dystonia Europe

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.