Terms of service

RARE-e-CONNECT is developed with the mission to provide secure, reliable and easy to use collaborative spaces to:

  1. support professional decision-making on the diagnosis and management of complex, rare or low-prevalence diseases in Cyprus, while promoting the development of national expertise.
  2. enable patients to share their own unique experiences about the day-to-day with the disease, listen and learn from others, share advice, tricks and tips that can contribute to a better quality of life.

The platform is managed by the RARE-e-CONNECT research and technical team who are responsible for advancing the above-mentioned mission by:

  • allowing registered members (Healthcare Professionals and patients) to connect with dedicated communities of Healthcare Professionals (HCPs) and people with similar symptoms and experiences respectively;
  • empowering patient organizations to engage with other patient organisations, and lend support to their communities through knowledge dissemination and guidance;
  • enabling members to discover disease-related material of interest through the various features of the platform;
  • collecting anonymised participation data to document the impact of web-based collaborative learning, and cross border dissemination of knowledge, and using them to make adjustments and ensure sustainable expansion of RARE-e-CONNECT contribution to medical and patient collaboration.

All users are obliged to abide by the rules as exemplified below to preserve the mission of the RARE-e-CONNECT platform at all times.

General rules for all members
  1. Participation in this platform is voluntary and there is no obligation to endorse content or follow advice. 
  2. Registration is required in order to access the features of the platform that are already available or will be available in the future. By registering to and participating in the platform, you agree with the terms and conditions of the platform as exemplified herein and commit to preserve the dual mission of the RARE-e-CONNECT project to provide a safe and supportive environment for patient-patient interaction and professional-professional interaction.
  3. You will not register under various accounts/ pseudonyms in order to post multiple messages. This will help maintain RARE-e-CONNECT a safe and secure environment for its users.
  4. You will participate with decency and respect to the purposes of the platform, the existing laws and legislations, and the rest of the members ensuring that the platform runs smoothly in maintaining its character and objectives, as put forward by the platform administrators. Otherwise and following due warning, the administrators have the right to cancel their participation of the members who do not comply with the rules. Specifically, RARE-e-CONNECT members are required to:
    • Utilise the platform’s search function to avoid nonsensical repetition of posts.
    • Express yourself clearly, decently and understandably and give titles that properly describe the content of your forum posts for the readers.
    • Be respectful of other members by:
      • respecting their opinions, beliefs, and differences.
      • being polite and keeping a measured tone in all exchanges especially when you disagree with their opinions.
      • keeping in mind that criticism is legitimate as long as it is confined to ideas and opinions and not the people who convey them.
      • not posting offensive content or engage in behaviour that is illegal.
      • refraining from undermining the morale of other members.
      • not posting hateful, threatening, violent or otherwise inappropriate content.
      • not spreading rumours or content that may harm or endanger the health and safety of others.
      • complying with the laws of your country. Particular emphasis must be on avoiding the spread of illegal content, respecting the privacy of other members, and protecting copyright and other intellectual property laws.
  1. Use English or Greek as the main languages of the platform to ensure understanding by all members.
  2. Not deviate from the topic being discussed and the objectives of the platform, posting irrelevant information and ensure the smooth flow of the conversations at all times.
  3. Document your views and opinions as much as possible. When reproducing information from another source, it is indispensable to quote the original text (magazines, newspapers, books, websites etc.) and cite the author and the source of the original text.
  4. Have only one account (register under only one pseudoname) and declare a valid email address, which will only be used for reasons related to the operation of the platform and will not be shared with third parties without the user’s written consent. The platform administration team has the right to deny access to members whose username is deemed offensive or not permissible to the present terms of use.
  5. Not participate in this platform with the objective to advertise commercial products or services and not to post referral links to any such website or service.
  6. Not post any unauthorized advertising messages: Any form of advertising is not allowed in the forums or in direct messaging. This applies with respect to treatments, clinical trials, registries, physicians, care facilities, etc. Some weblinks may be shared, but only those that link to content which conforms with the agreement that you are making to RARE-e-CONNECT (for example, you may link to personal pages that meet RARE-e-CONNECT standards, or you may link to websites that provide scientifically supported information that is relevant to the forum you are in.
  7. If you are using signatures, to ensure that it is discrete and it does not advertise any commercial products or services. The platform administration team has the right to remove signatures that are not compliant with these terms of use or those that are offensive. Signatures should indicate the users’relationship and capacity with respect to the information they share on the platform.
  8. Not collect users’ content or information from this website for your own personal or commercial use. This applies to any and all means of collection (e.g. manual, automated, direct and/or indirect).
  9. Not post the same topic or message more than once in order to maintain these forum posts at the top of the feed [bumping].
  10. Not search or publish links or information in order to acquire in any way illegal copies of copyrighted material.

 

It is the right of the platform administration team to judge whether topics remain active based on empirical knowledge that they do not bridge the Terms of Use of the platform nor do they lead to conflicts or nonsensical discussions deprived of any real value and service to the purposes of the platform.

Any message that breaks the hereby Terms of Use or does not align with the mission and the content of this platform will be locked or deleted accordingly. The author of content that bridges the present terms and conditions will receive a temporary or permanent ban from accessing the platform.

Specific Rules for Patients
  1. Unless it is otherwise stated, the posted content expresses the views and opinions of its authors and not of the RARE-e-CONNECT team. The RARE-e-CONNECT team takes no responsibility for, does not expressly or implicitly endorse, and does not assume any liability for, any content that is posted on RARE-e-CONNECT by its users (text, content, links and the like). For reasons that adhere to data protection, the personal profile of the patient or family is not accessible to other users registered on the platform unless the patient or family member themselves make it accessible to them. They can do that via the username they choose to register with or via their postings.
  2. Patients should always seek the advice of their physician or other qualified healthcare provider for any questions they may have regarding a medical condition, and not rely on information contributed by other patient users on the RARE-e-CONNECT forums and other communication tools. RARE-e-CONNECT content (such as text, graphics, images, information obtained from third parties, etc.), and other material is contributed by users on the site for informational/ supportive purposes only. It is not medical advice nor is it intended to be a substitute for professional medical advice, diagnosis, or treatment.
  3. Patients should never disregard professional medical advice or delay in seeking such advice because of something they have read on RARE-e-CONNECT forums and other communication tools. If they choose to rely on any such information and/or content is solely at their own risk.
  4. Patients will not offer medical advice: Patients must not offer, or be perceived to be offering, medical advice. Messages on forums must be for informational purposes only.
    • Patients should have in mind that the information posted by other users is often partial, and may only cover one aspect of a person’s illness(es) or experience(s). Therefore, patients should avoid generalizing from personal experience(s) and should clearly indicate if and when they are sharing their own personal story.
    • Any information relating to therapy or diagnosis, even if it comes from patient users who have ‘expert knowledge’ of their disease, must be received with caution. Only your physician is authorized to offer and/or confirm medical diagnosis and/or advice.
  5. Patients will not recommend treatments: Treatment options should only be provided by a qualified physician and should depend on the particulars of each individual’s medical history. The treatment choices of other users must be respected and forum members should never claim that a specific treatment is the only one that is effective for a particular disease.
  6. Forum patient members must also be careful when sharing their experience(s) with products and/or practices that have not been properly evaluated for the disease or symptom that is the subject of discussion within the forum.
Specific Rules for Healthcare Professionals
  1. Informed patient consent to share information: Healthcare Professionals who use the platform for knowledge-sharing agree to not use nor discuss patient information with colleagues within Cyprus and abroad without the patient’s written consent.
  2. Healthcare Professionals agree not to use this platform to promote advertising of any sort.
  3. Healthcare professionals are obliged to disclose all relevant information required that can verify the truthfulness of their identity during their registration on the RARE-e-CONNECT platform.

Moderators and administrators reserve the right to remove and disconnect any member or participant who violates the above terms and commitments, which may be done in their sole and exclusive discretion.

RARE-e-CONNECT administrators may, in accordance with their legal obligations, act quickly to remove data or make access impossible when they have knowledge that a member has circulated illegal content through RARE-e-CONNECT.

RARE-e-CONNECT has the right to deny access to anyone that tries to misuse the platform.

The platform team is not to be held responsible for any malignant fraud. It is however responsible for resolving it as early as possible.

Contact

Questions or comments with regards to the implementation of the present Terms of Service cannot be formulated publicly but via a personal message to the platform administrators at This email address is being protected from spambots. You need JavaScript enabled to view it..

Contact person/RARE-e-CONNECT research admin 

Victoria Antoniadou, PhD
This email address is being protected from spambots. You need JavaScript enabled to view it.

Copyrights

The content published on the RARE-e-CONNECT website, platform and social media channels is the intellectual property of the RARE-e-CONNECT project and the Cyprus Alliance for Rare Disorders. It is strictly forbidden to reproduce the information published on rare-e-connect.eu without permission and without proper acknowledgement.

The content of the content posted in the forums of the RARE-e-CONNECT platform is copyrighted to its author(s) except the published status of this content which the users irrevocably grant to rare-e-connect.eu.