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Conditions of use and Privacy statement

ERN-EuroBloodNet 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 Statement of conditions of use and Privacy applies to the ERN-EuroBloodNet Web site and governs data collection and usage.

The ERN-EuroBloodNet Web Site is comprised of various Web pages operated by ERN-EuroBloodNet. The ERN-EuroBloodNet Web Site is offered to you conditioned on your acceptance without modification of the terms, conditions, and notices contained herein. Your use of the ERN-EuroBloodNet Web Site constitutes your agreement to all such terms, conditions, and notices.

As a condition of your use of the ERN-EuroBloodNet Web Site, you warrant to ERN-EuroBloodNet that you will not use the ERN-EuroBloodNet Web Site for any purpose that is unlawful or prohibited by these terms, conditions, and notices. You may not use the ERN-EuroBloodNet Web Site in any manner which could damage, disable, overburden, or impair the ERN-EuroBloodNet Web Site or interfere with any other party's use and enjoyment of the ERN-EuroBloodNet Web Site. You may not obtain or attempt to obtain any materials or information through any means not intentionally made available or provided for through the ERN-EuroBloodNet Web Sites

The ERN-EuroBloodNet Web Site may contain links to other Web Sites ("Linked Sites"). The Linked Sites are not under the control of ERN-EuroBloodNet and ERN-EuroBloodNet is not responsible for the contents of any Linked Site, including without limitation any link contained in a Linked Site, or any changes or updates to a Linked Site. ERN-EuroBloodNet is not responsible for webcasting or any other form of transmission received from any Linked Site. ERN-EuroBloodNet is providing these links to you only as a convenience, and the inclusion of any link does not imply endorsement by ERN-EuroBloodNet of the site or any association with its operators.

Who we are?

The European Reference Network on Rare Hematological Diseases, ERN-EuroBloodNet, is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. ERN-EuroBloodNet is coordinated by Assistance Publique - Hopitaux de Paris (AP-HP), France. Coordination team include professionals from CUB-Hôpital ERASME, Brussels, Belgium and University Hospital Vall d’Hebron – Vall d’Hebron Research Institute, Barcelona, Spain.

Which kind of information is collected and for which purposes?

ERN-EuroBloodNet automatically collects information about your computer hardware and software, as your IP address, browser type, domain names, access times and referring Web site addresses. This information is used by ERN-EuroBloodNet for the operation of the service, to maintain quality of the service, and to provide general statistics regarding use of the ERN-EuroBloodNet Web site.

On the other hand, ERN-EuroBloodNet 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: coordination(ELIMINAR)

Processing of such data takes place at the University Hospital Vall d'Hebron– Vall d’Hebron Research Institute 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.

ERN-EuroBloodNet inventory of members and experts

As starting point for the mapping of clinical care services available at EU level for Rare haematological diseases, an inventory of ERN-EuroBloodNet members profiles was created including their area/s of expertise, diseases covered and numbers of patients involved, as well as their age range, and facilities for delivery of health provision covering both diagnosis and clinical care.

The inventory of ERN-EuroBloodNet members and experts is based on the implementation of members, healthcare providers, departments and experts profiles, gathering the essential information for a) identifying gaps on services and expertise on the different fields across Europe and b) showing publicly useful information for patients and health professionals through the website.

When completing the contact form available on the profiles at the Website, user must provide the information specified as a mandatory. The user is fully responsible for the veracity, legality and accuracy of the personal data provided and must not provide personal data of third parties without having obtained their prior consent.

The completion of the contact form and the pressing of the “save” button implies the express acceptance of this Privacy Policy. Personal data will only be processed with the consent of the user and only for the period necessary to meet the purposes for which they have been provided in each case.

In order to prevent to be contacted, the only data public available at the website will be the name and surname, while the contact information, as e-mail and telephone, will be kept in the database only accessible by authorized persons with password protected access. Only people authorized by ERN-EuroBloodNet will have access to your contact information.


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

The ERN-EuroBloodNet 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 Newsletter is sent by the General Data Protection Regulation-compliant email platform MailerLite. Express details on transparency and choices as well as the data privacy regulations can be found at:

The ERN-EuroBloodNet 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-EuroBloodNet may see if an email containing a newsletter was opened by a user, when it was opened, and which links were opened. 


ERN-EuroBloodNet 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 will be recorded and made them public available through ERN-EuroBloodNet website and social media channels. Accordingly by registering to the session the attendants understand and agree that the images shared and voices can be recorded and published at ERN-EuroBloodNet website and/or social media channels


The ERN-EuroBloodNet Web site uses "cookies" to help you personalize your online experience. A cookie is a text file that is placed on your hard disk by a Web page server. Cookies cannot be used to run programs or deliver viruses to your computer. Cookies are uniquely assigned to you, and can only be read by a web server in the domain that issued the cookie to you.

One of the primary purposes of cookies is to provide a convenience feature to save you time. The purpose of a cookie is to tell the Web server that you have returned to a specific page. For example, if you personalize ERN-EuroBloodNet pages, or register with ERN-EuroBloodNet site or services, a cookie helps ERN-EuroBloodNet to recall your specific information on subsequent visits. This simplifies the process of recording your personal information, such as billing addresses, shipping addresses, and so on. When you return to the same ERN-EuroBloodNet Web site, the information you previously provided can be retrieved, so you can easily use the ERN-EuroBloodNet features that you customized.

You have the ability to accept or decline cookies. If you choose to decline cookies, you may not be able to fully experience the interactive features of the ERN-EuroBloodNet services or Web sites you visit.

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.

ERN-EuroBloodNet Web Site we also use plugins from short-message network Twitter Inc. 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.

Google products

ERN-EuroBloodNet 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:

Express details on transparency and choices as well as the data privacy regulations can be found at the data privacy centre on

How ERN-EuroBloodNet uses my personal information? How is my data protected?

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

ERN-EuroBloodNet does not sell, rent or provide its customer lists to any third parties. ERN-EuroBloodNet may, from time to time, contact you on behalf of external business partners about a particular offering that may be of interest to you. In those cases, your unique personally identifiable information (e-mail, name, address, telephone number) is not transferred to the third party.

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

ERN-EuroBloodNet secures your personal information from unauthorized access, use or disclosure. ERN-EuroBloodNet 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 EuroBloodNet Web Site uses the Secure Socket Layer (SSL) connexions 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 storage in ERN-EuroBloodNet 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 ERN-EuroBloodNet at: coordination(ELIMINAR)

Changes to this Statement

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

Contact Information

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

ERN-EuroBloodNet Coordinating Center

Hôpital St Louis / Université Paris 7

1 avenue Claude Vellefaux


PARIS, France



All contents of the ERN-EuroBloodNet Web Site are: Copyright 2019 by ERN-EuroBloodNet and/or its suppliers. All rights reserved. Some of the images included in the website might be licenced by Adobe and iStockphoto.

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