We respect the privacy of visitors of the website and make sure that the personal information provided by you is treated confidentially. The processing of the personal data is done in line with the requirements made by the General Data Protection Regulation (AVG = Algemene Verordening Gegevensbescherming in Dutch). We are a CBF-authorised charity and follow the advice and guidelines of the CBF in the area of privacy. c will never sell/let/give personal data to third parties.

Contact form
You can send us a message by making use of the contact form. You can also write down your e-mail address on this form, enabling us to send you a message back. Your e-mail address will not be stored in our database and we will use it temporarily. We also collect personal data at other places on our website. For example, if you want to participate in one of our campaigns or events. These details will also not be stored in our database and be used by us temporarily.

Applications for research
The request form can be used to make an application for scientific research. We ask your name, the name of the organisation, your e-mail address and the telephone number. These details will not be stored in our database and we will use them temporarily.

We offer a newsletter to inform people interested about news, actions and related matters. Your e-mail address will only be added to the list of subscribers with your explicit permission. Every newsletter will contain a link to unsubscribe. The list of subscribers of the newsletter will not be passed on to third parties.

If you receive e-mail messages from us, we will register your interactions for the purpose of adjusting the content of our communication to what we think will be of interest to you.

If you give an authorisation to enable us to reach our objectives, we will always send a confirmation with all data required. With this we maximally comply with the requirements of the banks. An authorisation will preferably be sent by e-mail to save costs. Of course, we will send the confirmation by mail if we do not receive an e-mail address or if you want to receive the confirmation by mail.

Donate through the website
For processing donations we make use of the
Mollie payment system. Mollie is a recognised organisation that ensures safe payments. Mollie saves your e-mail address and transaction data. Stichting Ushersyndroom has entered into a processing agreement with Mollie, in which the obligations of Mollie to take technical and organisational measures for the protection of your personal data has been laid down.

Social Media
This website contains buttons for promoting pages or sharing these on social networks. Read the privacy statements of, among others, Facebook and Twitter (which are regularly subject to change) to see what they do with your personal data processed by them using this code.

What are your rights?
Based on the law you have various rights, such as a right of inspection, transferability and oblivion with respect to your personal data. We will respond to each request within four weeks. For this you can contact Stichting Ushersyndroom through

Adjust the privacy statement
We reserve the right to adjust this privacy statement. Adjustments will be published on this website

Our contact data are:

Stichting Ushersyndroom [Usher Syndrome Foundation]


Twitter: @usher_syndroom
Facebook: Ushersyndroom
LinkedIn: Ushersyndroom
Instagram: ushersyndrome
YouTube: Usher Syndroom

Stichting Ushersyndroom
Raapopseweg 128
6824 DV Arnhem
The Netherlands

Bank details:
Chamber of Commerce: 55 61 3004
RSIN 85 17 86 571
NL 85 RABO 0362.3905.25
in the name of Stichting Ushersyndroom [Usher Syndrome Foundation]

Most recent changes 17 June 2020