Last updated: December 2022

RARE-e-CONNECT.eu (hereinafter the “Site”) is a multifaceted telecollaboration and eLearning  technology for people living with Rare Diseases and Healthcare Professionals.  The general public or other interested bodies can use the open channels of the platform to raise their awareness about rare diseases.

RARE-e-CONNECT respects and protects the privacy of the people who use this platform at all times.

Who is responsible for your Personal Data

References in this Privacy Policy to “RARE-e-CONNECT” “we”, “us”, “our” are references to CYPRUS ALLIANCE FOR RARE DISORDERS which is a company limited by guarantee registered in the Republic of Cyprus, with registration number HE268253.

We respect your privacy and are committed to the protection of your personal data. Personal data (hereinafter referred to as ‘‘Data’’ or “Personal Data”) is information that directly or indirectly identifies and relates to you or other individuals. 

This Privacy Policy explains the type of Personal Data that we collect and how we collect, transfer, process, use and disclose your Personal Data as well as the security practices that we apply in order to protect your Personal Data.  Additionally, it contains information about third parties receiving your Data as well as your rights under local applicable data protection laws and the EU General Data Protection Regulation.

      1. Personal identification information

Participation on the RARE-e-CONNECT platform and use of its features requires email registration. Following registration on the platform, you will be asked to build your profile.

What other members of the platform see

If you are a patient or family and choose to make your profile public to the other patient/family members of the platform, they will be able to see what you share in your profile but NOT your email or full name.

They will only be able to see Username, Country, Capacity, Condition, Association membership, “About me” information, Communities you are a member of, Signature and Post. You choose what you want to make public to them in these fields.

If you are a healthcare professional, your colleagues can see all the information you share on your profile, except your email.

What the administration team of the platform can see

The administrators of the platform can see all the information that you share during registration.

Any information that may lead to your personal identification is not disclosed to any third party and will never be publicly visible outside the platform without the user’s express written consent.

Your email address will only be used for the purposes you gave it for (e.g., notifications about new posts on the platform, RARE-e-CONNECT newsletter).

    2. Technical information

We may collect technical information about Users whenever they interact with our Site. Technical identification information may include the browser name, the type of computer and technical information about Users, means of connection to our Site: operating system, the Internet service providers they use and other similar information.

1. To run and operate the Site

We use your Personal Data to complete and administer our website and to correctly display content on the Site.

2. To improve our Site

We may use the feedback you provide to improve our products and services.

3. To send periodic emails

We may use the email address to send information and updates.

4. To provide customer support / communicate with you

We may use your Personal Data to communicate with you for administrative or operational reasons, for example to provide customer support, to respond or handle any queries or requests, sending you a questionnaire or asking you to provide a review regarding your experience with us or send you any information we believe may be useful to you.

5. To protect against security issues

This includes issues such as for fraud prevention and detection or any illegal or unwanted activities or to protect our Site, network and software systems.

6. For legal claims purposes

In certain cases, we may need to use your Personal Data to handle and resolve legal disputes, to enforce our terms of use, or to comply with lawful requests from law enforcement authorities.

7. To conduct research and improve practices in healthcare

RARE-e-CONNECT is a research project co-financed by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation. Data will be solemnly collected to demonstrate (1) platform participation and (2) the impact of RARE-e-CONNECT for knowledge-sharing with regards to rare or low prevalence diseases in Cyprus.

All data will be analysed within the context in which they were produced to lead reliable conclusions at all times. All personal information will be removed i.e., all information will be anonymised before it is presented at conferences, research articles etc., unless consent has been given to allow otherwise.

Legal Justifications for processing your Personal Data

In order to lawfully process the Personal Data described above we rely on one or more of the following justifications:

Performance of a contract: The use of your Personal Data is necessary for the performance of a contract services. If we do not process your Personal Data, then we will not be able to provide our services.

Legitimate business purposes: We may use your information for our legitimate interests, such as to send you emails and newsletters, to improve and promote our products and services, to improve the content of our websites and social media platforms and to prevent fraud.

Your Consent: In cases where you have provided your consent to the collection and processing of Personal Data we will use the legal basis of consent. You may withdraw your consent at any time by contacting us at: This email address is being protected from spambots. You need JavaScript enabled to view it.

Our legal obligations: In some occasions we use Personal Data to comply with the legal and regulatory obligations we are subject to.

Initiation, establishment, exercise or defence of in court and out of court legal procedures.

You

In all cases, the user (e.g., patient, family, Healthcare Professional) is the one who chooses what data s/he shares in their profile. Please keep in mind that anything you choose to post within the communities of which you are a member is visible to all the members of that community or to all registered members of the same capacity (e.g., patient stories can be viewed by all the patients and families on the platform).

If you choose to post a story, you may be contacted by a RARE-e-CONNECT administrator for permission to publicly share your content on the platform’s webpage, YouTube channel and social networks for the purpose of achieving wider awareness about your disease experience. You can choose not to share your posts on social media and keep your user experience on RARE-e-CONNECT unaffected.

RARE-e-CONNECT research team/ admins

This platform is maintained by the RARE-e-CONNECT team who is responsible for the collection and proper management of all information that users submit.

 We do not sell, trade, or rent Users personal identification information to others. All generic aggregated demographic information that we may share is not linked to any personal identification information regarding visitors and users and it is shared with our funding bodies for the purposes of research as outlined in the formal announcement and descriptions of this project.

We may share your Personal Data with any of the following third parties:

• Our service providers, affiliates, contractors, business partners, agentssuch as cloud storage companies, IT support providers, software providers, analytics and search engine providers that assist us in the improvement and optimisation of our websites and social media platforms, and any other third-party vendors assisting us;
• Professional advisors and auditors such as external legal advisors and accountants;
• Courts, tribunals, arbitrators, or other judicial committees

We will only keep your Personal Data for as long as it is required for the fulfillment of the purposes of processing. We determine the appropriate retention period by considering the volume, nature and sensitivity of the Personal Data, the potential risk of harm from unauthorised use, loss or disclosure of your Personal Data, the purposes of processing and whether we can achieve those purposes through other means, and the applicable legal requirements.

We adopt appropriate data collection, storage and processing practices and security measures to protect against unauthorized access, alteration, disclosure or destruction of your personal information, username, password, transaction information and data stored on our Site.

In certain instances you may have the right to:

• request a copy of your Personal Data held by us;
• request the correction and/or deletion of your Personal Data, or restrict or object to the processing of your Personal Data;
• withdraw your consent to the processing of your Personal Data at any time, where processing is based on having your consent;
• request to obtain and reuse your Personal Data in a format that is structured and commonly used. You may also request by us to transmit such data to other organisations;
• complain to the Office of the Commissioner for Data Protection in cases where you believe that your data protection rights are being violated.

If you would like to exercise any of the above-mentioned rights, please inform as at This email address is being protected from spambots. You need JavaScript enabled to view it.

We may change, modify or update this Privacy Policy.  We encourage you to check this Privacy Policy to stay informed about how we are helping to protect the Personal Data we collect.  

If you have any questions, comments and requests regarding this Privacy Policy please contact us at: This email address is being protected from spambots. You need JavaScript enabled to view it.