Within the framework of the consortium of associations fighting against mitochondrial diseases under the name “MITOGETHER”, AFM-TELETHON and the following associations: ACO2 Gene Association; AGM (Association Guerrier Mitochondrial); AFAF (Association Française de l’Ataxie de Friedreich); AMMi (Association Française contre les Maladies Mitochondriales); Association Lilly Rose; CMT France (Charcot-Marie-Tooth France); Association Syndrome de Barth; Manon Cœur de Lion; MTFMT Leigh Syndrome; Association Ouvrir les Yeux; Warrior Gab & Co, Donne ton énergie au gène mtND5, have developed an institutional website designed to provide patients, their relatives, healthcare professionals, clinicians and researchers with documentation, news and events, scientific articles and any other relevant information related to the disease.

The main purpose of this document is to enable you to understand under what conditions your data are processed.

This personal data protection policy is addressed to users (hereinafter the “Users” or “you”) of the MITOGETHER website.

Its purpose is to inform you, in accordance with Regulation (EU) 2016/679 of the European Parliament and of the Council 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 the “Regulation” or “GDPR”), of how your personal information may be collected and processed through this website in connection with the use of the services offered.

The protection of your personal data is a priority for all the associations forming the consortium, which is why they undertake to process such data in the strictest compliance with the Regulation and with applicable national laws.

AFM-TELETHON, in its capacity as coordinator of the consortium, is designated as the data controller within the meaning of Article 4 of the GDPR and may be contacted by email at contact@mitogether.com or by post at the following address:

AFM – Téléthon
Délégué à la protection des données
1 rue de l’Internationale
91002 – Evry Courcouronnes – France

However, in the context of reviewing and responding to requests submitted through the Website’s contact form (including redirecting requests to the relevant associations to ensure an appropriate response), certain personal data may be transmitted to the aforementioned associations.

These associations then act as separate data controllers for the personal data they receive and process, in accordance with their own purposes and legal obligations.

In the interest of fairness and transparency, AFM-TELETHON ensures that data subjects are informed about the processing operations it carries out by providing information notices at the time personal data are collected.

Such data are collected lawfully and fairly. No data are collected without the Users’ knowledge, nor without their being informed.

When AFM-TELETHON processes personal data, it does so for specific purposes: each processing operation pursued serves a legitimate, defined, and explicit purpose.

For each processing activity carried out, AFM-TELETHON undertakes to collect and use only data that are adequate, relevant, and limited to what is necessary in relation to the purposes for which they are processed. AFM-TELETHON ensures that the data are kept up to date and implements procedures to enable the deletion or rectification of inaccurate data.

AFM-TELETHON collects and processes only the data necessary, as obtained through the contact form:

Each processing operation carried out by AFM-TELETHON serves an explicit, legitimate, and specific purpose, based either on compliance with a legal obligation to which the data controller is subject or on the legitimate interest pursued by the data controller. Furthermore, we retain your data only for the period necessary to achieve the purposes for which they are processed.

Within the limits of their respective responsibilities and for the purposes described, the main persons who may have access to your data are as follows:

• authorised personnel, including, in particular, individuals authorised to process, manage, and, where applicable, transfer your requests;
• our service providers, including the entity responsible for the operation of the online website;
• where applicable, the competent authorities upon request, including public bodies, relevant courts, mediators, ministerial officers, law enforcement authorities, and entities responsible for debt recovery, solely for the purpose of complying with legal obligations and, where necessary, for the investigation of offences committed online.

The storage of the data is provided by CLARANET, whose registered office is located in Paris:

CLARANET SASU
19 rue Michel Le Comte
75003 – Paris – France

In the event that personal data are transferred to a recipient country that does not ensure a level of personal data protection equivalent to that of the European Union, AFM-TELETHON undertakes—failing an adequacy decision and after having assessed the level of protection of your rights within the territory of the third country in which the recipient of your personal data is established—to take all necessary measures to ensure the protection of your personal data on the basis of appropriate safeguards (including, in particular, the Standard Contractual Clauses adopted by the European Commission), which may be obtained directly from AFM-TELETHON at the following address: contact@mitogether.com

AFM-TELETHON places particular importance on the security of personal data. It implements technical and organisational security measures appropriate to the level of sensitivity of the personal data, in order to ensure their integrity and confidentiality and to protect them against any malicious intrusion, loss, alteration, or disclosure to unauthorised third parties.

Nevertheless, the security and confidentiality of data also depend on the good practices of each individual; data subjects are therefore encouraged to remain vigilant in this regard.

AFM-TELETHON is particularly committed to ensuring the respect of the rights granted to you in connection with the data processing activities it carries out, in order to guarantee fair and transparent processing, taking into account the specific circumstances and context in which your personal data are processed.

• Right of Access
  In this regard, you have the right to obtain confirmation as to whether or not your data are being processed. When they are, you have the right to request a copy of your data and information concerning:
  • the purposes of the processing;
  • the categories of data concerned;
  • the recipients or categories of recipients and, where applicable, if such disclosures have been or will be made, the international organisations to which the data have been or will be disclosed, in particular recipients established in third countries;
  • where possible, the envisaged retention period for the personal data, or, where not possible, the criteria used to determine that period;
  • the existence of the right to request from the data controller the rectification or erasure of your personal data, the right to request the restriction of the processing of your data, and the right to object to such processing;
  • the right to lodge a complaint with a supervisory authority;
  • information about the source of the data when they are not collected directly from the data subjects;
  • the existence of automated decision-making, including profiling, and, in such cases, meaningful information about the logic involved, as well as the significance and the envisaged consequences of such processing for the data subjects.
• Right to Rectification of Your Data
  You may request that AFM-TELETHON rectify or complete your data if they are inaccurate, incomplete, ambiguous, or outdated.
• Right to Erasure of Your Data
  You may request that AFM-TELETHON erase your personal data in the cases provided for by applicable legislation and regulations.
  Please note that the right to erasure is not a general right and can only be exercised when one of the grounds provided for under the applicable regulations applies.
• Right to Restriction of Processing
  You may request the restriction of the processing of your data in the cases provided for by legislation and regulations.
• Right to Object to the Processing of Your Data
  You have the right to object at any time, on grounds relating to your particular situation, to the processing of your data.
  Where such an objection is exercised, AFM-TELETHON shall cease processing your personal data in connection with the processing concerned, unless it can demonstrate compelling legitimate grounds for continuing such processing. These grounds must override your interests, rights, and freedoms, or the processing must be necessary for the establishment, exercise, or defence of legal claims.
• Right to Data Portability
  You have the right to the portability of your personal data. This is not a general right. Not all data from all processing operations are portable, and this right applies only to automated processing, excluding manual or paper-based processing.
  This right is limited to processing operations based on your consent or on the performance of pre-contractual measures or a contract. It does not include derived data or inferred data, which are personal data created by AFM-TELETHON’s processing activities.
• Right to Withdraw Your Consent
  Where AFM-TELETHON processes data on the basis of your consent, you may withdraw your consent at any time. AFM-TELETHON will then cease processing your personal data, without prejudice to any processing already carried out on the basis of the consent you had previously given.
• Right to Lodge a Complaint
• You have the right to lodge a complaint with the supervisory authority (Commission nationale de l’informatique et des libertés – Service des Plaintes – 3 place de Fontenoy – TSA 80715 – 75334 Paris Cedex 07, or https://www.cnil.fr/fr/plaintes), without prejudice to any other administrative or judicial remedy.
• Right to Define Post-Mortem Instructions
  You may set out instructions regarding the retention, erasure, and communication of your personal data after your death, and designate a person to carry out these instructions. This person will then have the authority to access those instructions and request their implementation from the data controller.
  You may inform us of your instructions concerning the fate of your personal data processed by AFM-TELETHON in accordance with the procedures described below. You may modify or revoke your instructions at any time.
• Procedures for Exercising Your Rights
  All the rights listed above may be exercised:
  • via the Website’s contact form;
  • by email at: contact@mitogether.com
  • by postal mail sent to the following address:

AFM – Téléthon
Délégué à la protection des données
1 rue de l’Internationale
91002 – Evry Courcouronnes – France

upon providing proof of your identity by any appropriate means.

This personal data protection policy may be amended, in particular if the services offered on this website evolve. Consequently, we recommend that you consult this policy each time you access the website.