Terms and conditions of use (November 2024)

Updated November 2024

The website, available at https://marih.fr, and the Mast ‘O and ApliMÉO applications are available for download. ApliMÉO are the property of the MaRIH rare immuno-hematological disease health network, managed and financed by the French Ministry of Health and based at Hôpital Saint-Louis, Pavillon maladies rares, 1, avenue Claude Vellefaux – 75010 PARIS (hereinafter referred to as “MaRIH”). MaRIH “). Any use of the Applications automatically implies application of these General Terms of Use (hereinafter the “GTU”). GCU “). Prior to any use of the Applications, all Users must read the present GTU, accept them and undertake to comply with them.

ARTICLE 1. DEFINITIONS

The following terms, when used in these GTC, have the following meanings, it being understood that the definition given for a term applies whether that term is used in the singular or in the plural:

• • ” Applicationsrefers to the ” Mast’O ” and “ApliMO” applications. ApliMÉOApplications” refers to the “Mast’O” and “ApliMÉO” applications operated by MaRIH and includes all IT components (in particular software and IT developments, including source and object code programs, preparatory design work, specifications and preliminary studies, user documentation), graphic design (including projects, mock-ups, prototypes and plans), infrastructure and content, in particular texts, sounds, still or moving images, videos and databases;

• • ” Medical Team “refers to the medical team, as defined in article L.1110-12 of the French Public Health Code, involved in the care and treatment of User patients suffering from rare immunohematological diseases, in particular mastocytosis ;

• • “Privacy Policy ” refers to the document that defines how MaRIH collects, uses, stores and transfers Users’ personal data;

• • ” Services“refers to all the services offered free of charge to Users via the Applications and described in article 6 of the GCU.

• • ” website“refers to MaRIH’s website, accessible at the following address: https://marih.fr/, and which includes in particular all IT components (in particular software and IT developments and web pages, including source and object code programs, preparatory design work, specifications and preliminary studies, documentation relating to the use and operation of the website), the graphic charter (including projects, mock-ups, prototypes and plans), the infrastructure as well as the content, in particular text, sound, still or animated images, videos and databases ;

• • ” User“means any natural person using the Applications and benefiting from the Services.

ARTICLE 2. SUBJECT

2.1. The purpose of these GCU is to set out the rules for the use of the Services offered on the Applications by MaRIH to Users.

2.2. The GCU are systematically brought to the attention of Users to enable them to create a User Account. They apply exclusively to all requests for the creation of a User Account accepted by MaRIH and take precedence over all other conditions, with the exception of those expressly accepted by MaRIH.

2.3. Consequently, all other conditions are only binding on MaRIH after written confirmation by MaRIH.

IMPORTANT: NOTE TO USERS

ANY USE OF THE SERVICES FROM THE APPLICATIONS IMPLIES THE USER’S EXPRESS, PRIOR, FULL AND ENTIRE ACCEPTANCE OF THE GCU, BY CHECKING THE BOX: ” I have read and accept the General Terms and Conditions of Use ” WHEN FIRST USING THE APPLICATIONS.

ARTICLE 3. SERVICE PREREQUISITES

3.1. In order to use the Services from the Applications, the User must :

• • guarantees to be the legal representative in the event of use of the Applications by a User under the age of eighteen (18);
  • has a smartphone and/or tablet, connected to an Internet network;
  • has a wifi or cellular 3G/4G/5G Internet connection;
  • downloaded the Applications from the Apple Store or Google Play Sotre ;
  • accesses the Applications ;
  • has created a User Account as described in article 4 of the GCU.

3.2. MaRIH may not be held liable in the event of use of the Services by persons who do not meet the conditions set out in article 3.1. of the GCU.

ARTICLE 4. PRESENTATION OF SERVICES AVAILABLE VIA APPLICATIONS

4.1. By connecting to the Applications and creating a User Account, the User can access the information associated with his or her User Account.

4.2. The User has free access via his User Account to the following Services:

• • the ” section ObservationsIn the “Observations” section, the User can enter his or her daily symptoms and general condition, as well as take photographs of visible symptoms and add comments to these observations;
  • the section ” CalendarThe “Calendar” section allows the User to consult upcoming appointments with the Medical Team, treatments to be taken and ” observations ” entries entered by the User;
  • section ” TreatmentsIn the “Treatments” section, Users can enter the name of a treatment they are taking or have taken in the past, its dosage and frequency, activate a reminder, add comments and/or details about the treatment being taken, and check that it is actually being taken;
  • the ” section My appointmentsThe “My Appointments” section allows the User to add a medical appointment with a member of the medical team, specifying the address, date and time, and to create a reminder;
  • the section ” My examination results“allows the User to choose a type of medical examination, its date and result, as well as to add any comments on the examination concerned – the User can also consult his or her saved examinations from this section;
  • the section ” DocumentsIn the “Documents” section, the User can consult the documents he has imported into the Applications, add new documents and/or take photos of documents, and add comments where appropriate;
  • the section ” My medical team The “My Medical Team” section allows the User to add doctors and healthcare professionals to a directory and enter their contact information (e-mail, telephone number, address), thus enabling them to consult their Medical Team’s information;
  • the section ” ProfileThe “Profile” section allows Users to enter their medical history, allergies and intolerances, as well as the type of illness they suffer from;
  • the ” section Fill in a questionnaireThe “Fill in a questionnaire” section enables the User to prepare for any appointment with a member of his or her medical team by filling in a quality of life questionnaire;
  • the ” section Useful information“allows the User to consult useful information concerning mast cell activation syndrome and mastocytosis and contains links to information sites that may be of assistance;
  • the ” FAQ“section enables Users to find answers to frequently asked questions about their pathology;
  • the ” My emergency recommendationsThe “My recommendations in case of emergency” section allows Users to consult content related to their pathology in case of emergency, to transmit useful information to their medical team and to consult the form available at the following address:

https://www.orpha.net/pdfs/data/patho/Emg/Int/fr/Mastocytoses_FR_fr_EMG_ORPHA98292.pdf

 

ARTICLE 5. RESPONSIBILITY

5.1. MaRIH implements the means and measures necessary for the proper operation and maintenance of the continuitý and quality of the Services and the User acknowledges that MaRIH’s role is limited to that of a simple intermediary and technical service provider.

5.2. It is agreed between the Users and MaRIH that MaRIH shall in no event be held liable for any consequential damages suffered by the Users as a result of the use of the Services. 5.3. Furthermore, MaRIH may not be held liable for acts (i) resulting from an act or negligence on the part of the User and/or (ii) which do not comply with applicable regulations and/or the GCU.

5.4. MaRIH declines all responsibility in the event of a dispute, whatever the cause, between a User and a Medical Team, not attributable to MaRIH.

ARTICLE 6. ACCESS AND AVAILABILITY OF THE SITE AND APPLICATIONS

6.1. The Site and/or the Applications are accessible seven (7) days a week (7) and twenty-four (24) hours a day (24).

6.2. However, due to access to the Site and/or the Applications via the Internet, MaRIH does not guarantee operation and access to the Site and/or the Applications 7 (seven) days a week and 24 (twenty-four) hours a day.

6.3. MaRIH reserves the right to interrupt the operation of the Site and/or the Applications at any time, with or without notice, in particular in order to ensure the corrective and evolutionary maintenance of the Site and/or the Applications, or to develop their content or presentation and/or for any other legitimate reason.

6.4. Whenever possible, MaRIH will inform Users prior to any corrective or evolutionary maintenance operation.

6.5. Furthermore, Users acknowledge that the Site and/or the Applications may be interrupted for reasons beyond MaRIH’s control and that MaRIH cannot therefore guarantee uninterrupted access to the Site and/or the Applications.

6.6. Users are invited to inform MaRIH of any technical problems they encounter while browsing and/or using the Site and/or Web Applications by writing to the following address contact@marih.fr and describing the problem encountered.

ARTICLE 7. PERSONAL DATA

7.1. In accordance with Act no. 78-17 of January 6, 1978, as amended, relating to information technology, files and freedoms, known as the ” Information Technology and Freedoms ” Act, and Regulation (EU) 2016/679 on the protection of individuals with regard to the processing of personal data and on the free movement of such data (hereinafter, the ” RGPD “), the User is informed that MaRIH carries out automated processing of his/her personal data for the purposes of operating the Site only and in compliance with the aforementioned legislation and regulations.

7.2. Each User has the right to access, modify, rectify, limit, port and delete data concerning him or her, as well as the right to object.

7.3. To do so, the User must contact the support department by e-mail at the following address: contact@marih.fr.

7.4. Users are reminded that if they wish to rectify or update data relating to their User Account, they may do so directly on their own User Account.

7.5. For further information, the User is invited to read MaRIH’s privacy and personal data processing policy by clicking on the following link: [https://marih .fr/politique-de-confidentialite-2 /].

7.6. Regarding the Applications, MaRIH does not collect or store any personal data outside the User’s device. All information and data are stored locally on the User’s device and are never transmitted to external servers or third parties.

7.7. In addition, data stored locally on the User’s device is used solely for :

• • ensure the proper functioning of the Applications ;

• • save user settings and preferences ;

• • provide a personalized user experience.

 

7.8. Finally, data stored on the User’s device when using the Applications is protected by the native security measures of the operating system in question. MaRIH recommends that Users use additional safeguards, such as passwords or biometrics, to ensure the security of their devices.

ARTICLE 8. INTELLECTUAL PROPERTY

8.1. Certain elements (notably logos and/or illustrations) appearing on the Applications and/or the Site are protected by intellectual property laws and are the exclusive property of MaRIH.

8.2. Similarly, the trademarks, logos, graphics and animations contained in the Applications and/or the Site and/or the Services are the exclusive intellectual property of MaRIH.

8.3. It is agreed that the GTUs do not imply any transfer of MaRIH’s intellectual property rights.

8.4. MaRIH grants Users, on a personal basis, the non-exclusive and non-transferable right to use the Applications and/or the Site and/or the Services and any associated software, it being specified that they are prohibited – directly or indirectly – from copying, modifying, creating a derivative work, reverse engineer or assemble or in any other way attempt to obtain the source code (except as provided by law), sell, assign, sub-license or transfer in any way whatsoever any rights to the Site, Applications or Services or associated software.

8.5. Users undertake not to modify the Applications and/or the Site and/or the Services or the related software in any way and/or not to use modified versions thereof and in particular (without this list being limitative) with a view to obtaining unauthorized access to the Site and/or the Applications and/or the Services. In particular, Users agree not to access the Services by any means other than the Applications.

8.6. Users are informed and acknowledge that the Site, the Applications, the Services and any software used in connection therewith may contain confidential information or information protected by applicable intellectual property or other laws.

8.7. In the event of non-conforming or abusive use of intellectual property elements, MaRIH reserves all rights to put an end to the infringement of its intellectual property rights and to unregister and/or deactivate the User Accounts of the Users concerned.

ARTICLE 9. PROFESSIONAL SECRECY AND CONFIDENTIALITY

9.1. The data, information and documents relating to the User’s health entered on the Applications are covered by professional secrecy under the conditions set out in article L.1110-4 of the French Public Health Code, the violation of which is punishable under article 226-13 of the French Penal Code.

9.2. MaRIH personnel do not have access to health data, information and medical documents relating to the User, which they import on the Applications.

9.3. MaRIH undertakes to implement reasonable means, taking into account current professional standards and technological developments accessible to a reasonably diligent professional, to guarantee the security and confidentiality of data, information and documents provided by the User when using the Services via the Applications.

ARTICLE 10. FORCE MAJEURE

10.1. Cases of force majeure or fortuitous events are expressly considered to be those generally accepted by the jurisprudence of French courts and tribunals.

10.2. MaRIH cannot be held responsible if the non-execution or delay in the execution of any of its obligations, as described in the GCU, results from a case of force majeure as defined by article 1218 of the French Civil Code, including a health crisis. The suspension of obligations shall in no case be a cause of liability for non-performance of the obligation in question, nor lead to the payment of damages or late penalties. 10.3 However, if the event giving rise to the case of force majeure (hereinafter referred to as an “Event Event“) lasts for more than two (2) months, preventing MaRIH from fulfilling its obligations, MaRIH’s obligations under the GCU will be suspended for the duration of the Event from the time MaRIH notifies Users of the impossibility of fulfilling its obligations. The Parties attest that they are aware of the impact of a health crisis such as that of COVID-19 with regard to the potential effects on the time required to perform the Services.

10.4. The suspension of obligations shall in no case be a cause of liability for non-performance of the obligation in question, nor lead to the payment of damages.

10.5. In the event that the Event lasts for more than one (1) year, in one go or in several, definitively preventing MaRIH from fulfilling its obligations, the Parties undertake to meet in order to determine the outcome to be given to the Services and are released from their obligations under the conditions provided for in articles 1351 and 1351-1 of the Civil Code.

ARTICLE 11. AMENDMENTS TO THE CGU

11.1. In order to comply with any legal, jurisprudential, editorial, functional and/or technical changes to the Site, Applications and/or Services, MaRIH reserves the right to amend and/or modify the GCU at any time.

11.2. A change in the GCU does not constitute grounds for deletion of the User Account.

11.3. The version of the GCU that prevails is that which is accessible online on the day the User Account is validated.

11.4. The creation of a User Account by the User after the publication of the revised GCU means that the User unreservedly and expressly accepts these modifications.

11.5. The TOU are updated regularly. Consequently, Users are invited to consult and accept them when MaRIH modifies the GTU and notifies Users of such a change by e-mail.

ARTICLE 12. MISCELLANEOUS

12.1. The language of interpretation of the GCU is French. In the event of translation into one or more languages, the French text alone shall prevail in the event of dispute.

12.2. The TOS constitute the entire agreement between the User and MaRIH with respect to the Services.

12.3. The GCU govern all the terms and conditions of use of the Services, subject to the application of particular or specific conditions governing certain Services, for which the User must give his express agreement.

12.4. In the event of contradiction between the GCU and other elements, rules or guidelines appearing on the Site, the GCU shall prevail.

12.5. In general, if one or more stipulations of the GCU are held to be invalid or declared null and void in application of a law, regulation or following a final decision by a competent court, the other stipulations will retain all their effect. In such a case, the User and MaRIH agree to replace the invalid provision with a clause that most closely resembles the content of the clause initially agreed upon, in order to maintain the contractual balance. The same principles will apply in the case of incomplete provisions.

12.6. No tolerance, whatever its nature, scope, duration or frequency, may be considered as creating any right whatsoever, nor be interpreted as a waiver of any of the provisions of the GCU.

12.7. Any failure to exercise or delay in exercising a right or prerogative by MaRIH or the User shall not be considered as a waiver of the right or prerogative to be exercised subsequently in favour of MaRIH or the User.

12.8. In the same way, the exercise of a single right or the partial exercise of a right or prerogative does not exclude the subsequent exercise of other rights or prerogatives provided for in the GCU.

12.9. No waiver shall be effective unless in writing. A waiver applies only to the party to whom the waiver is addressed and in the circumstances for which it is given. No waiver shall arise from the success or failure of any other action.

12.10. Sections, paragraphs and other headings are for readability and indexing purposes only, and are not to be used to interpret the meaning in favor of MaRIH or the User.

12.11. The User shall comply with all applicable laws by fulfilling its obligations and exercising its rights in accordance with the GCU.

ARTICLE 13. LAWS AND LITIGATION

13.1. The GCU are governed by French law.

13.2. For any difficulties and/or questions regarding the Services, the User is invited to contact MaRIH at contact@marih.fr.

13.3. In the event of a disagreement between the User and MaRIH, the aggrieved Party must inform the other Party by registered letter with acknowledgement of receipt. Upon receipt of this letter, and within a period of fifteen (15) days, one of the Parties must propose an amicable solution to the dispute.

13.4. The Parties undertake to follow the amicable settlement procedure before taking legal action, this attempt at mediation being a condition of admissibility to any legal action.

13.5. IF ALL ATTEMPTS TO FIND AN AMICABLE SOLUTION FAIL, OR IF THERE IS NO RESPONSE, ALL DISPUTES RELATING TO THE SITE AND ITS APPLICATIONS, TO THE INTERPRETATION OR EXECUTION OF THE CGU, OR THOSE THAT MAY ARISE AS A RESULT OR CONSEQUENCE THEREOF, SHALL BE SUBJECT TO THE JURISDICTION OF THE COURTS OF PARIS, EVEN IN THE EVENT OF A WARRANTY CLAIM OR MULTIPLE DEFENDANTS.

ARTICLE 14. ENTRY INTO FORCE

The GCU come into force on 20/11/2024.