Privacy Policy

This privacy notice applies to and
Below you will find information about the collection of your personal data when you use this website.
The data protection officer for Rett Syndrome Europe is:
Stella Peckary Email:
When collecting and processing your data, we strictly comply with the data protection regulations. Below we will describe the precautions we take to protect your data, the type of data we collect, and why we collect it.
The Data Protection Act 2000, the Data Protection Act 2018, the General Data Protection Regulation (GDPR), and the Telecommunications Act 2003, as amended from time to time, serve as the legal basis. These legal provisions serve the right to protection of personal data.

I. Collection and processing of personal data

Your personal data are collected and subsequently processed if you voluntarily share them with us, or if you agree to the use of cookies.
In accordance with the applicable regulations for the protection of personal data, all personal data are primarily collected, processed and used for the purpose of fulfilling the services you tasked us with and to process your enquiries.
How do we get your data?
1. Information you provide / share
In principle, you are not obliged to directly provide any personal information when using our website.
2. Information you provide/share by using our services
In addition, some data are sent to us automatically for technical reasons as soon as you visit our website. Each time our website is accessed, or a file is retrieved, access data about this process are stored in log files. These include the following:
• the website from which you accessed our homepage;
• 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 access;
• notification in case of failed access and reason for error;
• your computer’s operating system and browser software.
These data are necessary for technical reasons. They allow you to view our website and ensure stability and security.

II. Legal basis, period of storage, and recipients of the data

The legal basis for the processing of your personal data is, in particular:
• your consent (Art 6(1)(a) GDPR) (e.g. sending out of newsletters, online job application, cookies);
• performance of the 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) (ensuring the stability and security of the website, defense of legal claims).
We process your personal data, to the extent necessary, for the duration of of the individual services (e.g. inquiries, reports, newsletter), and, further, in accordance with the statutory data storage regulations and documentation obligations and/or as long as we have a legitimate interest in storage to be able to defend against any liability claims.
Your data are transmitted to the Board members of Rett Syndrome Europe (and volunteers, mentioned on that need them to fulfil our obligations and to protect our legitimate interests.
In addition, we pass your data on to processors commissioned by us who need them to perform their respective tasks. All processors are contractually obligated to treat your data confidentially and to process them only within the scope of the performance of services. Our processors have committed themselves to compliance with the applicable data protection regulations, and they have signed processing contracts in accordance with Art 28 GDPR. You can request further information on the processors commissioned by us from For instance, the software service company commissioned by us to manage our website may gain access to your personal data during its activities if this is necessary for it to fulfil its services.

III. Cookies

Our website uses so-called cookies. Cookies are small text files used to identify the user and analyse your use of our website. The data generated in this way are transferred to the provider’s server and stored there. They generally serve to enhance the user-friendliness, efficiency, and security of our website. Cookies also gather statistics on website traffic and are used for general navigation. They do not cause any damage.
Some cookies remain stored on your device until you delete them. They allow us to recognize your browser the next time you visit us.
By using our website, you consent to our use of cookies. You may refuse the use of cookies by selecting the appropriate settings in your browser. Please refer to your browser manufacturer’s instructions to find out how this works in detail. If you decide to block certain technical and/or functional cookies, the functionality of our website may be restricted.

IV. Google Analytics

This website uses Google Analytics, a web analysis service provided by Google Inc., 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA (“Google”). Google Analytics uses “cookies”, which are text files stored on your computer, to help the website analyse how you use the site. The information generated by the cookie about your use of this website (including your IP address) is transmitted to and stored by Google on servers in the United States. Google uses this information on our behalf to evaluate your use of the website, to compile reports on website activity, and to provide other services relating to website activity and Internet usage to website operators. We only use Google Analytics with active IP anonymization. This means that Google shortens the IP address of users within Member States of the European Union or in other states party to the Agreement on the European Economic Area. Only in exceptional cases is the IP address transmitted to a Google server in the US and shortened there. Google does not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings in your browser; however, please note that if you do this you may not be able to use the full functionality of this website. You can also prevent Google from collecting the data generated by the cookie and relating to your use of the website (including your IP address) and from processing this data by downloading and installing the opt-out browser add-on available at:
We use Google Analytics to analyse and regularly improve the use of our website. For more information on Google’s terms of service and its privacy policy, please visit and

V. Consent and right of revocation

Where the processing of your data is based on your consent, we will only process it after you have given your explicit consent.
In principle, we do not process any data of minors and are not permitted to do so. 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 sending your revocation to: In the event of revocation of consent, the lawfulness of the processing carried out on the basis of the consent until revocation is not affected.

VI. Seminars, Conferences, meetings, Assemblies

If you participate in an event organized or (co-)managed by us, the data you provided upon registration (usually name, email address, company) will be stored for up to 2 years based on the performance of the contract or our legitimate interest about organization and follow-up support.
Your data will only be processed within Rett Syndrome Europe.
Should your data not have been collected by us, we refer you to the organizer of the event in question as the source of the data.

VII. Data security

The security of your data is our highest priority. For this reason, we make every effort to take all the necessary technical and organizational precautions to ensure that the data processing is secure and that your personal data are processed in such a way that they are protected against accidental or intentional manipulation, loss or destruction, or against access by unauthorized third parties. We are continually improving our security measures in line with technological developments.

VIII. Your rights

In principle, you have, at all times, the right to be informed, the right to rectification, the right to erasure, the right to restrict processing, the right to data portability, the right to revoke, and the right to object. If you believe that the processing of your data violates data protection law or that your data protection rights have otherwise been violated in any way, you can submit a complaint to the supervisory authority. The legal basis for any direct mailings you may receive from us (e.g. a postal invitation to an event) is our legitimate interest. However, pursuant to Art 21 GDPR, you have the right to object at any time to processing of personal data concerning you. Please send your objection to

IX. Information and contact

You retain control of all personal data that you share with us. Upon request, we are happy to provide you with written confirmation of whether any of your personal data are stored with us and, if so, which. You may also request the deletion of your data stored with us, provided that we do not need them for the performance of our contract with you, or we are obliged to store them for legal reasons, or we need the data to defend ourselves against any liability claims.
If you have any questions or suggestions regarding this privacy policy, please send an email to

Last updated on November 9th,2018

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