At the European Joint Programme on Rare Diseases, we are aware and committed to the protection of privacy.

The General Data Protection Regulation (GDPR) entered into force on May 25, 2018.  Focused on data privacy, GDPR is the new EU legal framework for the protection of personal data. It includes several key changes to existing EU data protection law, including data breach notification, accountability and enhanced individual rights. GDPR will affect all organizations and public bodies, wherever located, that handle data of persons in the EU.  Over the past few years, we have been preparing for this and are taking steps to ensure timely compliance with those rules.

You will find below the detail on our practices in connection with information that we collect, use and disclose through activities that link to our service and the choices you can make about the way your information is collected and used.

By providing Personal Information to us, you agree to the terms and conditions of this Privacy Policy.

What EJP RD collects

EJP RD may collect the following types of Personal Information, in a various way, including, but not limited to:

  • Information about user visit and use of this website (this includes IP Address);
  • Personal Data freely provided by the user -this includes name, email address, and any other details specifically asked in registration forms or registration for newsletters-;
  • Other personal or sensitive information related to spontaneous forwarding of personal document (this includes Curriculum Vitae).

Failure to provide certain Personal Data may make some of the services provided by the Website unavailable.

User information will not be disclosed to any third party unless the user have given the consent to such disclosure.

What EJP RD do with the information gathered

User’s Personal Data may be collected in particular for the following reasons:

  • To respond to user’s inquiries and fulfill requests (newsletter, questions and comments). User’s email address may be added to the mailing list and user may receive email messages containing information about news or events;
  • To re-contact the user if EJP RD needs to do so (voluntary submission of personal document i.e. CV);
  • To give the access to EJP RD reserved area(s).

EJP RD does not share personally identifiable information with unrelated Third Parties, which are not covered by this Privacy Policy without user’s prior permission, except to the extent reasonably necessary to:

  • Correct technical problems and malfunctions;
  • Protect the security and integrity of our Website;
  • Protect our rights, interests and property and the rights, interests and property of others;
  • Comply with laws or to respond to judicial process;
  • Provide information to law enforcement agencies or for an investigation of a matter as applicable, or otherwise as required or permitted by law.

How EJP RD assures Security

To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, EJP RD has put in place appropriate physical, electronic, and managerial procedures to safeguard and secure the information that is collected online. The Data processing is carried out using computers and/or IT enabled tools, following organizational procedures and modes strictly related to the purposes indicated. In addition the Data are accessible to external parties (such as third party technical service providers, mail carriers, hosting providers, IT companies) appointed as Data Processors by EJP RD and covered by this Privacy Policy.

If the user provides EJP RD with information about third parties, it is assumed that the consent to do so has been given to collect, process and transfer their Personal Data to the same extent as those of the user.

Where EJP RD processes the Data

The Data is processed at EJP RD operating offices and in any other places where the parties involved with the processing are located. For further information, please contact us at

How long the Data is retained

The Data is kept for the time necessary to provide the service requested, or stated by the purposes outlined in this document, and the user has always the right to request suspension or removal of personal data. This can be done at any moment and without providing any specific explanation.

In case the user decides to spontaneously forward personal documents (this includes Curriculum Vitae) containing personal or sensitive data, these will be kept for 2 years.

What are User’s rights

The user has the right, at any time, to know whether his/her Personal Data has been stored and to learn about contents and origin, to verify accuracy or to ask for them to be supplemented, cancelled, updated or corrected, or for their transformation into anonymous format or to block any data held in violation of the law, as well as to oppose their treatment for any and all legitimate reasons. Requests should be sent to EJP RD at the following address:

Use of cookies

The EJP RD Website uses ‘cookies’. A cookie is a small text file that is placed on the hard disk of the user whenever he/she starts to navigate a Website. Cookies are uniquely assigned to each user, and can only be read by a webserver within the domain that issued the cookie.

The EJP RD Website uses cookies, defined as “technical”, in order to recall information on the user’s subsequent visits. This simplifies the process of recording the user’s personal information, such as addresses. When the user return to our Website, the information previously provided can be retrieved.

The user may accept or decline cookies. Most web browsers automatically accept cookies, but users can usually modify their browser settings to decline cookies should they so prefer. If users choose to decline cookies, they may not be able to fully experience the interactive features of the EJP RD services or websites being visited.

Google Analytics

EJP RD may collect files that record interaction with this Website (System Logs) or use for this purpose other Personal Data (this includes IP Address). An IP address is a number assigned to a user by his/her Internet service provider to access the Internet. Although EJP RD receives information on IP addresses, they are not being used to identify the users personally or disclose them to others.

As specified in Art. 6, paragraph 1, point f) of GDPR, EJP RD may have access and use user’s IP Address through Google Analytics web analysis service utilizing the Data collected to track and examine the use of EJP RD Website, to prepare reports on its activities and share them with other Google services. Google may use the Data collected to contextualize and personalize the ads of its own advertising network.

The user may selectively disable the Google Analytics’ installation on his/her browser, with the opt-out option provided by Google. To disable Google Analytics action, please refer to the link below:

Third party cookies

When visiting EJP RD Website, the user may receive cookies from visited site run by other organizations (third parties) for example “embedded” video or “social plugin” from social networking services. These are parts of the page visited generated directly from these sites and integrated into the site’s host page. The most common use is aimed at content sharing on social networks.

The presence of these plugins entails the transmission of cookies to and from all sites managed by third parties. The management of information collected by third parties is governed by their policies.

Other Third-Party Websites

EJP RD Website may contain links to other Third-Party Websites. The user should carefully review the Privacy Policies and practices of other websites, as EJP RD does not have any control or responsibility over Third-Party Websites. Therefore, EJP RD cannot be responsible for the protection and privacy of any information, which the user provides whilst visiting such sites and such sites are not governed by this Privacy Policy.

Changes to this Privacy Policy

EJP RD reserves the right to make changes to this Privacy Policy at any time by giving notice on this page and alerting the users by email. Nevertheless, it is strongly recommended to check this page and refer to the date of the last modification listed in the right corner of the page. The use of our Website following these changes means that the user accepts the revised Privacy Policy.

Contact Us

If you have any questions regarding this Privacy Policy, please contact us at communication(at)