Information sheet and consent


Information and Consent Sheet

1. In what context are your data collected? is dedicated to patients and their relatives who want to learn and exchange information with patients suffering from the same illness. The following services are offered to registered Members of

  • Space for monitoring the news and activity of Members of their community and their contacts;
  • Discussion forums: to share and discuss their illness with all Members in their community;
  • Private messaging;
  • Health profile: a space for monitoring the main indicators of their illness (e.g., physical condition, mood, sleep quality, blood pressure, weight, etc.);
  • Health scorecard: graphical summary of the information entered in the health profile to be printed and shared with their doctor at medical consultations;
  • Treatments: record of current drug treatments with option to note perceived efficacy, possible adverse side-effects and to give opinions;
  • Medical appointments: automated appointment reminder system;
  • Knowledge base: space for sharing links to articles and/or videos related to their illness
  • Studies, research, surveys: possibility of answering questionnaires suggested by ELSE CARE on its own behalf or on behalf of its contractual partners.

IMPORTANT: Before becoming a member of, you must familiarise yourself with the conditions under which your personal data will be collected, processed, used and hosted, as well as your rights and obligations as a Member using the services offered by

For your information, your email address can be used to identify your IP address and possibly to geolocate you. ELSE CARE SAS is committed to using email addresses only to contact its users.

The general terms and conditions of use of (here) and the code of conduct (here) may be accessed from all pages of or via the following link.

To allow you to register as a Member of, we require your active and voluntary consent:

  • to the general terms and conditions of use of
  • and the processing of your personal health data to enable you to benefit from the services described above.

2. For what purposes will your data be used?

Your data may, subject to your express consent, be used in the following ways:

  • To enable you to benefit from the services that interest you and for which you wish to register, namely:
    • The dissemination and sharing of information and a variety of content relating to health, physical condition, human illnesses and pathologies, and all products and/or services relating thereto,
    • Your contact with the other members of affected by the same illness, as chosen by you,
    • The exchange of information and content with other Members of through private e-mails and/or via the community’s publication spaces and interactive discussions (e.g. news feeds, discussion forums, private messaging, etc.),
    • Use of individual health monitoring tools,
  • You are hereby informed that, in this context, personal data - in particular identification data and health data - about you are collected and processed on the basis of your express consent and in compliance with the general terms and conditions of use of
  • Your data may also be processed to allow you to receive corporate or promotional information from ELSE CARE or its partners via your private messaging service, on topics of interest to you, on the basis of voluntary, active and specific consent on your part. For example, you may receive information on studies and surveys to enable you to participate if you so wish and/or to be put in contact with the organizations responsible for carrying out such studies and/or surveys.

You may withdraw your consent at any time without providing a reason. In this case, you acknowledge that you will no longer be able to benefit from the services available from and/or receive corporate and promotional information.

Please note that the withdrawal of your consent will not affect the lawfulness of the processing performed prior to the withdrawal of your consent.

Your data may also be used within the context of studies or evaluations in the field of health, including semantic, scientific, medical, medico-economic observations, or quality of life aspects implemented by ELSE CARE on its own behalf, or on behalf of its contractual partners, unless specifically objected to by you, for each study brought to your knowledge beforehand, and after implementation of all the formalities required by CNIL (Commission Nationale de l’Informatique et des Libertés, French Data Protection Authority) when they are applicable.

Studies are conducted after the application of enhanced security measures to ensure respect for your privacy.

Lastly, ELSE CARE may also produce statistics within the context of its activities and the services accessible from, which it implements after aggregating your data so you can no longer be identified and to ensure your anonymity.

3. Who is responsible for the processing of your data?

Within the meaning of French Law 78-17 of 6 January 1978, as amended, relating to IT data, files and freedoms, and within the meaning of EU Regulation 2016/679 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, of 27 April 2016 (together known as the “Regulations”), the following legal entities are respectively responsible for the processing of your data insofar as they are concerned by them:

  • The company ELSE CARE as the publisher of for the provision of the services presented above, accessible via,
  • In the absence of opposition from you, for each study or evaluation in the field of health including semantic, scientific, medical, medico-economic observations, or quality of life aspects with your prior knowledge, by any sponsor, e.g. ELSE CARE or its contractual partners.

ELSE CARE uses subcontractors who apply adequate safeguards to implement appropriate technical and organizational measures to ensure the confidentiality, security and sustainability requirements for these data are met.

4. To whom are your data sent and for how long are they kept?

Your personal data and in particular your health data are strictly intended for ELSE CARE, as well as only those members that you specifically authorize for this purpose, as and when you use the services of

Where appropriate, your data will be sent to health study and evaluation agents, subject to your specific opposition to each study previously brought to your attention.

ELSE CARE guarantees that your personal data will not be sent to any third country outside the European Union.

ELSE CARE guarantees that your personal data, and in particular your personal health data, will not be sent to any unauthorized third party.

Your data for use of the services offered through are kept for the necessary duration for the use of these services. If ELSE CARE finds that your personal account has been inactive for 5 years, ELSE CARE will send you a message informing you of the closure of your account before your personal data is deleted.

5. What rights do you have regarding your data?

In accordance with the aforementioned regulations you have:

  • the right to access and rectify your personal data;
  • the right to object to and delete your personal data;
  • the right to communicate your instructions regarding the fate of your personal data after your death;

You also have:

  • the right to withdraw your consent at any time;
  • the right to request restriction of processing;
  • the right to be forgotten and to erasure of personal data;
  • the right to the portability of your data;
  • the right to lodge a complaint with the CNIL.

To exercise your rights, you may send a private message to ELSE CARE directly from your personal account.

You may also contact the ELSE CARE Data Protection Officer for any questions regarding your personal data, at the following e-mail address:

Last updated: 25/03/2020