What is Dystonia Europe?
Dystonia Europe is an independent non-profit organisation registered in Brussels, Belgium. 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 MyBrainNet?
MyBrainNet is an information platform, which includes an electronic diary accessible through an app which can be found on the applications page of this website. The goal of MyBrainNet is to facilitate a central platform where apps can connect to, and where all data will be stored securily and with options to share data with medical researchers. The use of MyBrainNet 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 MyBrainNet for the first time through one of the apps, data is gathered for registration purposes. The latter includes your full name, email address, date of birth, city of residence, gender, country of residence and information about your specific disease and treatment. Such data is required for the functioning of the app. 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 on the MyBrainNet server. 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, and with your explicit consent, 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.
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 MyBrainNet as well as for medical research purposes.
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: firstname.lastname@example.org
The organisation designated as “controller” as defined by the Belgian Commission for the Protection of Privacy:
Square de Meeus 37 – 4th Floor
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, July 2020
Dystonia Europe IVZW
Square de Meeus 37 – 4th Floor
Tel: +46 739 98 49 61
Executive director: Monika Benson
President: Adam Kalinowski
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.