Privacy Policy

ERN-ITHACA is committed to protecting your privacy and using technologies that give you the most 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). 


ERN-ITHACA newsletter aims to keep all the interested persons in the field of rare malformation syndromes, intellectual and other neurodevelopmental disorders updated with the latest news at the national or European level and main activities and results achieved by the network.

ERN-ITHACA 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 ERN-ITHACA newsletter is sent by the General Data Protection Regulation-compliant MailPoet plugin by Automattic. Express details on transparency and choices as well as the data privacy regulations can be found at:

ERN-ITHACA newsletter makes use of tracking in order to be able to conduct a statistical analysis of the success or failure of online marketing campaigns. ERN-ITHACA 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.


ERN-ITHACA webinars program 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 sessions are recorded and uploaded to ERN-ITHACA 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.


ERN-ITHACA 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

Some of our pages may display content from external providers, e.g. YouTube, Facebook and Twitter.
To view this third-party content, you first have to accept their specific terms and conditions. This includes their cookie policies, which we have no control over.
But if you do not view this content, no third-party cookies are installed on your device.

Third-party providers that this website may have:

These third-party services are outside of the control of the Commission. Providers may, at any time, change their terms of service, purpose and use of cookies, etc.

Contact form

Our contact form allows you to send a comment or question to a general e-mail address. When you send such a message, your personal data is collected only to the extent necessary to reply. If you have any questions about the processing of your email and related personal data, do not hesitate to include them in your message.

How to control cookies

You can control and/or delete cookies as you wish. You can delete all cookies that are already on your computer and you can set most browsers to prevent them from being placed. If you do this, however, you may have to manually adjust some preferences every time you visit a site and some services and functionalities may not work.

The following is a list of the most common browsers:

Internet Explorer




Google Chrome 

Contact details

For any questions regarding our privacy policy, please contact the ERN-ITHACA coordination team.

You have the right to be forgotten and removed completely from the ERN-ITHACA contact database. To request this, please contact the ERN-ITHACA coordination team.

Hôpital universitaire Robert-Debré | APHP
48, boulevard Sérurier
75019 Paris