Privacy Policy

2 · How we collect and use your data

What we collect, and why.

We collect personal data only when you actively share it with us, or when you accept the use of cookies. Whenever it is collected, it is used for the purpose you tasked us with — such as answering your enquiry — and nothing else.

Collection and processing of personal data

You are not obliged to provide any personal information when simply browsing our website. However, some data is sent to us automatically each time the site is accessed or a file is retrieved. These access data are stored in log files and include:

• the page from which you accessed our website;
• the IP address assigned to you by your provider;
• the access time and date;
• the volume of data transferred;
• the name of the retrieved file or page;
• notification of successful or failed access (with reason for any error);
• your computer’s operating system and browser software.

This information is necessary for technical reasons. It allows you to view our website and helps us ensure its stability and security.

Legal basis, storage period, and recipients

The legal basis for processing your personal data is, in particular:

• your consent (Art. 6(1)(a) GDPR) — for example, sending out newsletters or storing optional cookies;
• performance of a contract (Art. 6(1)(b) GDPR);
• compliance with legal obligations (Art. 6(1)(c) GDPR);
• protection of our legitimate interest (Art. 6(1)(f) GDPR), such as ensuring the stability and security of the website or the defence of legal claims.

We process your personal data, to the extent necessary, for the duration of the individual service (an enquiry, a report, a newsletter subscription, etc.) and beyond that only in line with statutory data-storage and documentation obligations or for as long as we have a legitimate interest in being able to defend against potential liability claims.

Your data are transmitted only to the Board members and volunteers of Rett Syndrome Europe who need them to fulfil our obligations and to protect our legitimate interests. We also pass your data on to processors commissioned by us — for example, the company that manages our website — when this is necessary for them to perform their tasks. All processors are contractually obligated to treat your data confidentially, to process them only within the scope of the agreed services, and to comply with the applicable data-protection regulations under processing contracts in accordance with Art. 28 GDPR. You can request further information on the processors commissioned by us at info@rettsyndrome.eu.

4 · Your rights and consent

Your consent — and your rights at any time.

Where the law requires consent, we ask for it explicitly. You can withdraw it at any time, and you have the full set of rights granted to you by the GDPR.

Consent and right of revocation

Where processing of your data is based on your consent, we will only process it after you have given that consent explicitly. We do not knowingly process the data of minors. By giving your consent, you confirm that you are 14 years or older or that you have the consent of your legal guardian.

You may revoke your consent at any time by writing to info@rettsyndrome.eu. Revoking your consent does not affect the lawfulness of processing carried out before the revocation.

Your rights

At all times, you have the right to:

• be informed about the processing of your data;
• have inaccurate data rectified;
• have your data erased;
• restrict processing;
• data portability;
• revoke consent;
• object to processing.

If you believe that the processing of your data violates data-protection law, or that your data-protection rights have been violated in any way, you may submit a complaint to the supervisory authority. The legal basis for direct mailings you may receive from us (for example, a postal invitation to an event) is our legitimate interest. Pursuant to Art. 21 GDPR, you have the right to object to that processing at any time by emailing info@rettsyndrome.eu.