Global Network of Neurofibromatosis Patient Organisations

Privacy Policy

It is important to us to protect your personal data sufficiently. We therefore observe the applicable legal European and Austrian provisions, in particular the Basic Data Protection Regulation (“DSGVO”), the Austrian Data Protection Act (“DSG”) and the Telecommunications Act (“TKG”) when we process your data.

What data do we collect?

When you join our association, we will record your name and email address. We use this information for the purpose of membership management, outreach and delivery of the simplistic relevant information to fulfill our (pre-) contractual obligations and due to our legitimate interests.

Will your data be disclosed to third parties?

We leave your personal information to the extent necessary to external service providers (processors), as IT service providers or other suppliers of tools and software solutions that support us also in the provision of our services. We also disclose your personal data to the extent necessary for membership management to external parties based on our legitimate interests (for example, accountants, legal representative) and the starting and test case to authorities and other public bodies in the mandatory extent.

How is your data protected?

We take appropriate technical and organizational security measures to protect your personal data. In addition, we are obliged to maintain confidentiality. Our concern in terms of DSGVO (legitimate interest) is to improve our offer and our web presence. Since the privacy of our users is important to us, the user data is pseudonymized.

What rights you have over your data

For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.

If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.


Our website uses cookies. These are text files that are stored on your device using the browser. We use cookies to make our website more user friendly. Some cookies remain stored on your device until you delete them. They allow us to recognize your browser on your next visit. If you do not want, you can set your browser so that it informs you about the use of cookies and allow it only in individual cases. When disabling cookies the functionality of our site may be limited.


When visitors post comments on the website, we also collect data that appear in the comment form, the visitor’s IP address and user agent string (so that the browser is identified) to support the identification of spam.
An anonymous string can be created out of your e-mail address (also known as hash) and can be passed to the Gravatar service to check if you use this. You can find the privacy policy of the Gravatar service here: Once your comment has been approved, your profile picture will be publicly visible in the context of your comment.


You have the opportunity to subscribe to our newsletter via our website. For this we need your e-mail address and your statement that you agree to the terms of the newsletter. In order to provide you with targeted information, we also collect and process voluntary information about areas of interest.
Once you have subscribed to the newsletter, we will send you a confirmation email with a link to confirm your registration. The subscription of the newsletter can be canceled at any time. Please send your cancellation to the following e-mail address: We then delete your data related to the newsletter mailing immediately. This revocation shall not affect the legality of the processing effected on the basis of the consent until the revocation.


NF Patients United uses Online-Fundraising-Software to raise donations. For that we work together with Altruja. Here you find information for the Altruja data protection: Datenschutzerklärung.

What rights do you have?

You have to obtain information on clear, transparent and
easy-to-understand manner about how we process personal data. You have the right to receive information about the personal data we process about you. You also have the right to correct inaccurate data and deletion of your data. You can also withdraw your consent for processing with an effect for the future. You may also be entitled to a restriction on the processing of the data, to opposition and to the right to transmit your data. You have the option to address complaint to the data protection supervisory authority.

The responsible data protection supervisory authority for this website is: Österreichische Datenschutzbehörde, Wickenburggasse 8, 1080 Wien, Austria, Europe.

Before submitting a complaint to the data protection supervisory authority or other questions, please contact us: