Personal Data Processing Notice

(ex art. 13 GDPR 2016/679)

This Information Notice concerns the processing of personal data of the users who are the recipients of the personal authentication credentials necessary to access the private area of the website where documents relating to the current project will be found.

Data Controller: The Data Controller of the users’ personal data is the Telethon Foundation, with registered office in Rome, via Varese 16B, contactable at Tel +39 06 440151, Fax +39 06 44 015521, E-mail

Any third parties who, on behalf of FT, will be called upon to carry out data processing activities shall be appointed as external Data Processors.

The Data Controller has appointed a Data Protection Officer (Data Protection Officer-DPO), Avv. Michela Maggi, whom the data subject may contact at the following addresses: and/or

Purposes of the processing and legal basis: The personal data of users, such as name, surname and e-mail address are processed for the following purposes:

Subscription to the informative newsletter related to the UPGRADE project – Unlocking Precision Gene Therapy – Grant Agreement Number 825825.

The legal basis for the processing is the consent of the data subject (art. 6, par. 1, letter a of EU Reg. 679/2016). The consent of the data subject can always be revoked.

Processing methods: Personal data is processed only to the extent strictly necessary for the pursuit of the purposes set out above, and by means of paper, computer and/or telematic tools. Personal data are not subject to automated decision-making processes.

Adequate security measures are taken to ensure the quality, integrity, availability and traceability of sensitive data, to minimise the risks of accidental knowledge and abusive or unauthorised access to them.

Nature of data conferment:  The provision of data in relation to processing based on consent is optional and, if denied, will prevent the sending of informative communications relating to the project.

Circulation and storage of data: Personal data may only be processed for the purposes set out in this Policy by the Data Controller. The data shall not be disseminated in any way, but may be transmitted to the competent bodies for administrative or institutional purposes, as required by current legislation. The data will not be transferred to a third country or international organisation. The data will be kept for the time necessary to achieve the purposes for which it was collected, to the extent necessary to fulfil legal and fiscal obligations and in any case not beyond the date of termination of the relationship/contract existing between the interested parties and the Foundation. Processing based on consent shall continue until such consent is revoked, without prejudice to the lawfulness of processing based on consent given before revocation.

Rights of the data subject: Every data subject is entitled to exercise specific rights. In particular, data subjects are entitled to the rights relating to the personal data covered by this information notice, as provided for and guaranteed by the Regulation:

  • Right of access and rectification (Art. 15 and 16 of the Regulation): the right to access your personal data and to ask for them to be corrected, amended or supplemented.
  • Right to erasure of data (Art. 17 of the Regulation): in the cases provided for by the current legislation, you may request the erasure of your personal data.
  • Right to restriction of processing (Art. 18 of the Regulation): the right to request the restriction of the processing of your personal data in the event of unlawful processing or contestation of the accuracy of your personal data by the data subject.
  • Right to data portability (Art. 20 of the Regulation): the right to receive your data in a structured format and transfer it to another data controller without hindrance, where the processing is carried out by automated means.
  • Right to object (Art. 21 of the Regulation): right to object at any time to the processing of personal data carried out on the basis of a legitimate interest or public interest, justifying the request.
  • Right to lodge a complaint (Art. 77 of the Regulation): the right to lodge a complaint with the competent Data Protection Authority if you believe that your rights have been or are being infringed with regard to the processing of your personal data.

In order to exercise the rights listed above, requests should be addressed to the Data Controller who will respond to your requests. Any data subject who considers that the processing of his/her personal data violates the applicable privacy legislation has the right to lodge a complaint with the supervisory authority (

By virtue of the application of Italian law, in the event of any conflict of interpretation between the Italian language version and the English language version of these General Conditions of Use, the Italian version shall prevail.