Privacy Statement

V5 22-03-2022 | 16:53:16

This Privacy Statement applies to the processing of personal data provided by sponsors, donors, benefactors, volunteers, action starters, participants, and relations (hereinafter: Personal Data), as well as data obtained from visits to and the use of the website EpilepsieNL.

EpilepsieNL is the owner of this website and of the data obtained through this website. EpilepsieNL shall determine the purposes for which the data are processed. EpilepsieNL is the 'Controller' within the meaning of the General Data Protection Regulation (GDPR). This website was made with Kentaa, a product of Kentaa B.V. Kentaa is a 'Processor' within the meaning of the GDPR. Kentaa must take adequate technical and organisational security measures to protect your Personal Data. This obligation has explicitly been included in a Data Processing Agreement between EpilepsieNL and Kentaa.

Purpose of the processing of your Personal Data

Through the website EpilepsieNL, EpilepsieNL processes (personal) data for the following purposes:

  • Creating and managing a personal fundraising page and the realization and execution of sponsoring, gifts, donorship, or crowdfunding
    EpilepsieNL stores data such as your name, email address, bank details, data ralated to transactions or donations, participation data, the personal fundraising page or data that are relevant in case you and EpilepsieNL enter into an agreement or you contribute financially to EpilepsieNL's objectives as a sponsor, donor, collector, action starter, or participant to actions or events.
  • Notifications about activities
    EpilepsieNL shall keep sponsors, donors, benefactors, action starters, participants, volunteers, 'friends', and other interested parties informed about its activities by sending them emails, provided that you have given permission for this. EpilepsieNL shall always ask consent before processing your personal data. EpilepsieNL may also ask for your (financial) support through emailing.
  • Optimising the website and emails
    To optimise the content of EpilepsieNL's emails, the open and click ratio of emails can be monitored and recorded at an individual level. EpilepsieNL does this to keep its messages as interesting as possible for the receiver. Cookies are also placed on the website EpilepsieNL, to optimize the website and to enable us to offer relevant content. For more information, please refer to the Cookie Statement.
  • Improving the services
    In some cases, EpilepsieNL uses the email addresses of donors, sponsors, action starters, participants of events, and relations for research to improve the services.

    EpilepsieNL stores data to offer and execute events or travels, or to grant benefits to patients. In order to realise these objectives, we may ask for health data. You must give your explicit prior consent for the processing of these special personal data for the purposes described above. EpilepsieNL registers that consent.
  • Social media advertising possibilities
    To show you specific posts and advertisements, EpilepsieNL may use the options offered by social media platforms, such as Facebook, to advertise through their services. EpilepsieNL uses Facebook's email list custom audiences to reach or exclude specific target groups. EpilepsieNL creates a Custom Audience by uploading the email addresses of its members/donors to an advertising tool. This group can then be linked to or excluded from a specific Facebook campaign. EpilepsieNL uses the Facebook pixel to measure the effectiveness of advertisements. You can opt out from receiving advertisements or change your preferences, through the privacy settings of the social media platform, e.g. Facebook.

Method for processing your Personal Data

EpilepsieNL collects (and therefore processes) personal data through different forms on this website. When you sign up for participation in an event, or start or sponsor an action, become a donor, or make a donation, EpilepsieNL may ask you for your personal data. EpilepsieNL also does that if you sign up for receiving (email) newsletters, request information, ask information about activities, ask a question, or respond to the website. Sometimes, EpilepsieNL may validate personal data or combine them with information from external sources. This is how EpilepsieNL keeps its database up to date.

If it turns out that any person who leaves their personal data on the website EpilepsieNL, for any reason, is under 16, EpilepsieNL shall verify if these data were provided with a parent's or guardian's consent, as far as possible with the technical means available. If such consent is missing, EpilepsieNL shall not process the personal data.

Security of your Personal data

EpilepsieNL has taken appropriate physical, techniccal, and organisational measures for the protection of your personal data. Through its processor Kentaa, EpilepsieNL uses a secure server that can only be accessed by authorised persons. Any data you upload to online forms, is sent with encryption. Data of participants, action starters, sponsors, donors, relations, volunteers, friends, and other interested parties are stored on secure systems.

Storage period of your Personal Data

We shall not store your data for any longer than is necessary to achieve the objectives referred to in this Privacy Statement.


For realising and processing sponsoring, support payments, gifts, donations, and crowdfunding, EpilepsieNL, through its processor Kentaa, uses the services of Buckaroo B.V.. Buckaroo B.V. processes the payments between the donation platform and your bank or creditcard provider. This way, Buckaroo B.V. has access to your payment data. EpilepsieNL or Kentaa, respectively, made a processing agreement with Buckaroo B.V., under which Buckaroo B.V. is obliged to take appropriate technical and organisational measures for the protection of your personal data.

Your data at action starters, participants, and project managers

In case you make a donation or a sponsor gift, or participate in a crowdfunding action (e.g. a once-only donation or contribution to a crowdfunding project or other action), the action starter/participant you sponsor or the project manager of the crowdfunding action you made a donation to, has access to your contact details and your donation. In that case, your data shall be used only to inform the action starter, participant, or project manager, to sent you a thank-you note, or to keep you informed about a campaign or action. Your data shall not be shared with third parties. You may object to the processing of your data by EpilepsieNL. The provisions are fully applicable to this processing of your personal data.

Your rights

EpilepsieNL and any processors hired by EpilepsieNL shall respect your rights under the GDPR. You can always access the data processed by EpilepsieNL and have them altered or erased, free of charge. If you have a log-in account for this website, the dashboard will give you an overview of your personal data stored for the use of this website once you are logged in. Through the dashboard, you can request we erase these data. If you do not have a log-in account, you can contact us to obtain access, or have the data altered or erased.

If wished, you can also receive your data in a machine-readable format (through a link you can use to download those data), for example to send them to another organisation. You can also object to receiving specific information about the service that EpilepsieNL sends you by email, telephone, mail, and/or SMS. To request a copy of your data or to object to the processing of your personal data, please contact EpilepsieNL via the following email address: Any other questions you might have with regard to the processing of your personal data may also be sent to the aforementioned email address.

If you request EpilepsieNL to erase your personal data from its database, EpilepsieNL shall respond to your request proportionally. In some cases, your request for the erasure of your personal data may not be granted fully, for example, because the Dutch Tax Authority requires that agreements be kept for 7 years. Even is you ask EpilepsieNL to stop contacting you for marketing purposes, EpilepsieNL will have to remember your name to be able to exclude you from future campaigns. If your request for erasure of your personal data cannot be granted, partially or completely, EpilepsieNL shall inform you about the reason for this.


If you have signed up for a digital newsletter or updates by email, each email contains a link through which you can opt out.

Data Protection Authority

EpilepsieNL will gladly help you if you have any complaint about the way EpilepsieNL processes your personal data. Under the privacy legislation, you have the right to lodge a complaint about the way EpilepsieNL processes your personal data with the Data Protection Authority. Please contact the Data Protection Authority if you wish to do so (for more information, please refer to:


This Privacy Statement was originally drawn up in the Dutch language. It has been translated into the English and French language. In case of conflict between the French or English version of this Privacy Statement and the Dutch version, the Dutch version shall prevail. All terms used in this Privacy Statement shall be understood to be Dutch legal terms, and shall be interpreted in accordance with the GDPR.

Any questions?

If you have any questions regarding our Privacy Statement, please contact us via:

EpilepsieNL reserves the right to change this Privacy Statement. We recommend that you check this Privacy Statement for changes regularly to stay informed.