Privacy & Legal Policy

Privacy Policy

DATA PROTECTION

DetectEBV is committed to ensuring the confidentiality and data protection rights of website users and visitors, and to processing personal data in accordance with all applicable data protection laws and regulations, including, but not limited to, the General Data Protection Regulation EU 2016/679 (GDPR).

This data protection information explains the processing operations that DetectEBV carries out on the personal data it uses.

What is personal data?

Personal data is any information relating to an identified or identifiable natural person (“the data subject”), such as first and last names, an address, a telephone number, an email address, a date of birth, gender, health-related data, or location data (“personal data”).

Data controller:

For the purposes of the GDPR, the data controller—who determines the purposes and means of processing personal data—is the DetectEBV collective. For requests and inquiries regarding personal data protection, you may contact: info@detectebv.org.

Personal data we process:

• Identity data: Including first name and last name(s).
• Contact data: Including email address.
• Professional data: (Applicable to health professionals), including title, specialty, and professional registration or association number.
• Technical and device usage data: Including IP address, browser plug-in types and versions, operating system, and other navigation data (obtained through cookies).
• Image data: Including photos and voice from recordings; only if there is authorisation from the image rights holder.
• Special category data: Including health-related data. For the processing of this type of personal data, informed consent will be required and/or it will be carried out for reasons of public interest in the field of public health.

Purposes, legal basis, and retention periods

Finally, we inform you that we do not collect health data or other special categories of personal data unless we have the consent of the data subject. Furthermore, we do not collect or process personal data from minors.

Disclosure of personal data

The personal data we collect on this website may be shared with collaborating healthcare professionals and other associations, in accordance with the aims and purposes set forth in this information and pursuant to the declared legal bases. The DetectEBV Collective may require the assistance of service providers to carry out certain business-related activities and, consequently, needs to communicate personal data to partners with whom it has signed data processing agreements in order to fulfill its commitments and obligations.

Transfers of your personal data outside the European Economic Area (EEA)

No transfers of personal data outside the EEA will be carried out.

Security of your personal data

The DetectEBV Collective adopts the appropriate technical and organizational measures to ensure a level of security adapted to the risk posed by the processing of the data subjects’ personal data, in order to protect their rights and freedoms. These measures have been established to protect personal data from destruction, loss, alteration, accidental or unlawful disclosure, or unauthorized access by third parties.

Your rights

Data subjects have the possibility to request the exercise of the following rights:

• Right of access: You have the right to obtain confirmation as to whether or not your personal data is being processed and, where applicable, to obtain precise information about the processing of your data. You also have the right to request a copy of the information we hold about you.
• Right to rectification: You have the right to request that we rectify inaccurate personal data, specifically by completing or correcting all or part of the information we hold about you.
• Right to erasure (right to be forgotten): You have the right to request the erasure of personal data concerning you and all the information we hold, if applicable.
• Right to restrict processing: You may request that some of your data not be processed.
• Right to data portability: You may request to retrieve your information in a structured, commonly used, and machine-readable format and transfer it to other data controllers.
• Right to object: You may object to the processing of personal data concerning you.

The application of these rights is not absolute. Requests to exercise these rights will always be evaluated by the management of the DetectEBV Collective.

When the processing of your data is based on your consent, you may withdraw your consent at any time, simply and without any justification.

If you wish to receive more information about the processing of your data or to exercise your rights, you can send your requests by email to the DetectEBV Collective at: info@detectebv.org.

You also have the right to lodge a complaint with the Data Protection Authority of the European Union Member State of your habitual residence, your place of work, or the place of the alleged infringement, if you believe that your personal data is not being treated in accordance with the GDPR. You will find the contact details for the various European data protection authorities via the following link: https://ec.europa.eu/justice/article-29/structure/data-protection-authorities/index_en.htm

Specifically, the Data Protection Authority in France is: 

Commission Nationale de l’Informatique et des Libertés – CNIL 

3 Place de Fontenoy 

TSA 80715 

75334 PARIS CEDEX 07 

Tel. +33 1 53 73 22 22 Fax +33 1 53 73 22 00 

Website: http://www.cnil.fr/

• Processing of personal data for the publication of testimonials and healthcare experiences

Purpose: To share the experiences of people affected by the Epstein-Barr virus and support them in the fight against the pathology or the symptoms it causes. To share the healthcare experiences of health professionals who treat this pathology.

This involves being able to publish and translate written testimonials, accompanied or not by a photo of the witness affected by the Epstein-Barr virus, in the documents, websites, and social networks of the DetectEBV Collective. For the publication of these testimonials, the DetectEBV Collective will request legal authorization for their disclosure. Relevant personal data will be managed through the corresponding request for informed consent and/or for reasons of public interest in the field of public health.

Your rights

You may exercise your rights of access, rectification, objection, erasure, portability, and restriction of processing before the DetectEBV Collective by sending a request by electronic means to: info@detectebv.org. The DetectEBV Collective undertakes to adopt all reasonable measures so that personal data is deleted or rectified when it is inaccurate.

Terms of use: The DetectEBV Collective shall exercise all exploitation rights linked to your testimonial and your image.

The DetectEBV Collective shall exercise all exploitation rights related to your testimonial and image. The DetectEBV Collective is authorized to translate, or manage the translation into any language, of your testimonial and healthcare experience. Both the testimonial and its translations shall remain the exclusive property of the DetectEBV Collective. The DetectEBV Collective expressly undertakes not to transfer these authorizations to third parties, as well as to refrain from carrying out any unlawful exploitation or any use not previously contemplated of your written testimonial and image that could infringe upon your dignity, reputation, private life, or any other harmful exploitation according to current regulations.

Within the established framework, the collection and use of your written testimonial and image shall not generate any right to remuneration or compensation of any kind. This express acceptance is final and excludes the possibility of any future claim for remuneration.

Last revised on April 22, 2026