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Privacy Policy

VASCERN is committed to protecting your privacy and developing technology that gives you the most powerful and safe online experience in accordance with the Regulation EU 2016/679 of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data (hereinafter General Data Protection Regulation). This privacy policy applies to the VASCERN website and governs data collection and usage.

Which kind of information is collected and for which purposes?

VASCERN automatically collects information about your computer hardware and software, as your IP address, browser type, domain names, access times and referring website addresses. This information is used by VASCERN for the operation of the service, to maintain quality of the service, and to provide general statistics regarding use of the VASCERN Web site.On the other hand, VASCERN may collect personally identifiable information (as name, telephone, e-mail…) for some specific purposes described below. Assistance Publique – Hôpitaux de Paris is responsible of the file storing this information and registered on 14th February 2018 before the French Data Protection Agency (nr.2153057). The user may exercise the rights of access, rectification, cancellation or opposition by written request to the following e-mail address: vascern.coordination@vascern.eu.

Processing of such data takes place at the Assistance Publique-Hôpitaux de Paris, Hôpital Bichat–Claude Bernard in agreement with the General Data Protection Regulation, and with relevant national legislation.

Pursuant to the provisions of personal data protection regulations, it is informed that the personal data provided by the user will be processed only in connection with the purposes for which in each case they were provided.

Contact Form

VASCERN has a contact form, which activates your email software and allows you to send a comment or question to a general email address. When you send such a message, your personal data is collected only to the extent necessary to reply. If the team responsible for the mailbox is unable to answer your question, or your question has regards to another party, it might forward your email to another service.

If you have any questions about the processing of your email and related personal data, do not hesitate to include them in your message.

The collected personal data and all information related to the above mentioned consultation is stored on the email server of the VASCERN Coordinating office and potentially those who have been concerned in the correspondence in order to respond to your comment.


The VASCERN Newsletter aims to keep all the interested persons in the field of rare vascular diseases updated with the latest news at the national or European level and main activities and results achieved by the network.

The VASCERN newsletter acts in accordance with the General Data Protection Regulation, offering the possibility to unsubscribe at any time through the unsubscribe button located in our newsletter.

The VASCERN newsletter makes use of tracking in order to be able to conduct a statistical analysis of the success or failure of online marketing campaigns. VASCERN may see if an email containing a newsletter was opened by a user, when it was opened, and which links were opened.

You may always unsubscribe from our newsletter at any time through the unsubscribe button located in our newsletter. VASCERN is both the controller and responsible for processing of any data regarding the newsletter. VASCERN does not make use of a third party for the Newsletter service.


VASCERN webinars aims to facilitate the transfer of knowledge and expertise health professionals and patients to learn highly specialized knowledge without the need to travel and whenever they wish. Webinars will be recorded and uploaded to the VASCERN website, accordingly by registering to the session the attendants understand and agree that their voices can be recorded and published if comments or questions are made during the webinar.


VASCERN only tracks anonymised data for statistical purposes. We do this via analytical cookies, placed through an anonymous IP Google analytics tag. The purpose of these cookies is to track the efficiency and success of the website.

These cookies do not store any personal data that can be linked to a natural person, but may save data such as inter alia, data about the website from which a person has come (the so-called referrer), which sub-pages were visited, or how often and for what duration a sub-page was viewed. The data collected through this is general data only, and cannot be traced back to one person.

It is possible to prevent the setting of cookies, by means of a setting of the Internet browser used. On top of that, already set cookies may be deleted at any time via an Internet browser or other software programs. This is possible in all popular Internet browsers.

Google Analytics does not share any data with third parties.

The principles of data protection do not apply to anonymous information and because these cookies minimally impact the privacy of the user, it is not necessary to ask for permission to use these cookies.

Embedded content from other websites

Publications on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.

The VASCERN website also uses plugins from short-message network Twitter Inc and you can recognise the Twitter plugins (“Tweet” button) by the Twitter logo (a white bird on a blue background) and the addition of “Tweet”. If you access a page on our website that contains such a plugin, a direct connection is made between your browser and the Twitter server. As a result, Twitter receives the information that you have visited our website with your IP address. If you click on the Twitter button while you are logged into your Twitter account, you can link the content of our site to your Twitter profile. This enables Twitter to assign the visit to our site to your user account. We wish to point out that, as the provider of the site, we receive no information of the content of the transmitted data or its use by Twitter. For more information on this, click here. If you do not wish Twitter to be able to assign the visit to our site, please log out of your Twitter user account.

VASCERN website also equally social plugins (“plugins”) provided by the social network facebook.com, operated by Facebook Inc., 1601 S. California Avenue, Palo Alto, CA 94304, USA (“Facebook”). The plugins are identifiable by a Facebook logo (white letter f on blue background or a thumb up icon) or the notice “Facebook Social Plugin”. For a full list of all social Plugins please see http://developers.facebook.com/plugins. When you visit a page of our website that contains a social plugin, your browser establishes a direct connection to Facebook servers. Facebook directly transfers the plugin content to your browser which embeds the latter into the website, enabling Facebook to receive information about your having accessed the respective page of our website. Thus we have no influence on the data gathered by the plugin and inform you according to our state of knowledge.

The embedded plugins provide Facebook with the information that you have accessed the corresponding page of our website. If you are logged into Facebook, your visit can be assigned to your Facebook account. If you interact with the plugins, for example by clicking “Like”, or entering a comment, the corresponding information is transmitted from your browser directly to Facebook and stored by it. Even if you are not logged into Facebook, there is possibility that the plugins transmits your IP-address to Facebook. For the information on the purpose and scope of data collection and procession by Facebook, as well as your rights in this respect and settings options for protecting your privacy please visit Facebook’s privacy policy: http://www.facebook.com/policy.php.

Google products

VASCERN Web Site uses the following Google products: Google Maps to depict maps, Google Forms to conduct surveys and Google Analytics to analyse the site traffic. They are operated by Google Inc., 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA. By using this website, the user agrees to the recording, processing and usage of data both automatically collected and input by the user (including the IP address) by Google, one of its representatives or a third-party provider. The terms of use for Google Maps can be found at the following link: https://policies.google.com/terms?hl=en&gl=en.

Express details on transparency and choices as well as the data privacy regulations can be found at the data privacy centre on google.de: https://policies.google.com/privacy?hl=en&gl=en.

How VASCERN uses my personal information? How is my data protected?

VASCERN collects and uses your personal information to operate the VASCERN Web site and deliver the services you have requested, as listed above. VASCERN also uses your personally identifiable information to inform you of other products or services available from VASCERN and its affiliates. VASCERN may also contact you via surveys to conduct research about your opinion of current services or of potential new services that may be offered.

VASCERN does not sell, rent or provide its customer lists to any third parties.

VASCERN does not use or disclose sensitive personal information, such as race, religion, or political affiliations, without your explicit consent.

VASCERN secures your personal information from unauthorized access, use or disclosure. VASCERN secures the personally identifiable information you provide on computer servers in a controlled, secure environment, protected from unauthorized access, use or disclosure. For security reasons the VASCERN Web Site uses the Secure Socket Layer (SSL) connections for the transfer of data.

For how long will my data be stored? What if I decide that my data should not be used anymore?

Your data will be stored in VASCERN until such time as the objectives have been met, which may be several decades from now. However, you can see, edit, or delete your personal information at any time. Website administrators can also see and edit that information.

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. You have the right to be forgotten and removed completely from the contact database without the need of justification by contacting VASCERN at: vascern.coordination@vascern.eu.


VASCERN reserves the right to modify, without prior notice, the present general conditions of use of the www.vascern.eu website.

Changes to this Statement

VASCERN will occasionally update this Privacy Policy to reflect company and customer feedback. VASCERN encourages you to periodically review this Statement to be informed of how VASCERN is protecting your information.

Contact Information

VASCERN welcomes your comments regarding this Privacy Statement. If you believe that VASCERN has not adhered to this Statement, please contact VASCERN at:

VASCERN Coordination

Healthcare Provider Coordinator: Assistance Publique-Hôpitaux de Paris, Hôpital Bichat–Claude Bernard

Centre de Réference (CRMR) Syndromes de Marfan et apparentés

46 rue Henri Huchard

75018 PARIS


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