Privacy policy

Last updated: December 2019 is a multifaceted technology and national research project aiming to provide telecollaboration and e-learning opportunities to people living with Rare Diseases and Healthcare Professionals respectively.

Specifically,  RARE-e-CONNECT seeks to (1) allow knowledge creation about Rare Diseases from the perspectives of patients, families and Healthcare professionals (HCPs) in Cyprus via a dedicated online platform, and (2) measure the impact of the proposed technology on achieving a benefit for the Rare Disease community.

RARE-e-CONNECT respects and protects the privacy of the people who use this platform at all times. All personal data protection rights are understood and handled in line with (1) the General Data Protection Regulation (EU) 2016/679 (GDPR) and (2) research ethics including data anonymization at all times.

Before continuing to use this platform you must accept our privacy policy so please take a moment to read the content below explaining what data we collect, why we collect them, and how we protect them against all third party consultation, as well as the research procedures we follow with regards to the data we do collect.

  • RARE-e-CONNECT has the right to update this privacy policy at any time.
  • By using or continuing to use the RARE-e-CONNECT platform, you declare that you accept the Privacy policy and Terms of use as they are formulated herein or modified at any given point in time. We encourage Users to frequently consult with this page for any changes in the privacy policy. By registering to the RARE-e-CONNECT platform, you agree that it is your responsibility to review this privacy policy periodically and become aware of modifications.

The kind of data we collect

i. Personal identification information

Participation on the RARE-e-CONNECT platform and use of its features requires email registration. During your navigation in the platform, you will be asked to build your profile; however, apart from the username, no other information is made available to the other users on the platform. They only see what you choose to allow them to see via your username, signature or postings. Only the administration team of the platform can see what you declare as Full name, Username, Email, Registration date.

Whatever personal information (full name, username, email etc.) you share is not disclosed to any third party and will not be visible outside the platform without the user’s express written consent. Your email address will only be used for the purposes you gave it (i.e., communication with other registered users on the platform, receive RARE-e-CONNECT newsletter or alerts to any information that you have specifically requested you be notified about such as new forum posts).

ii.   Non-personal identification information

We may collect non-personal identification information about Users whenever they interact with our Site. Non-personal identification information may include technical information about the browser name, the type of computer used, users means of connection to our Site, operating system and the Internet service providers, and other similar information.

iii.    Web browser cookies

Our Site may use cookies to enhance User experience. Users' web browser e.g., Chrome, Mozilla, Internet Explorer places cookies on the users' hard drive for record-keeping purposes and sometimes to track information about them. User may choose to set their web browser to refuse cookies, or to alert them when cookies are being sent. If they do so, note that some parts of the Site may not function properly.

RARE-e-CONNECT uses cookies for the following purposes:

  • to enable certain functions of the website,
  • to provide analytics
  • to store your preferences and personalize the content
  • to improve the user experience

You can refuse cookies by clicking Reject when you come across the relevant notification.


Why we collect data

1. To run and operate the Site

We may need your information to display content on the Site correctly.

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 User information and updates. It may also be used to respond to their inquiries, questions, and/or other requests.

4. 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 anonymised participation and (2) the impact of the RARE-e-CONNECT technological structure for knowledge-sharing about rare or low prevalence diseases in Cyprus.

All data will be analysed within the context in which they were produced/disclosed at all times to give way to reliable conclusions, while all personal information will be removed i.e., all information will be anonymised before it is presented at conferences, research articles etc.

Who controls your data


In all cases, the user (e.g., patient, family, Healthcare Professional) is the one who chooses what data s/he shares. 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 patients).

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 YouTube channel and Social  Media 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.

Who has access to your data

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.

How the research team/admins protect your information

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.

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.

Your rights

In accordance with applicable data protection laws and regulations, you can access to, rectify or restrict the processing of your Data.

You can stop participating/sharing data on RARE-e-CONNECT at any time by emailing This email address is being protected from spambots. You need JavaScript enabled to view it..

Also, by emailing the above-mentioned e-mail address, you may opt-out from receiving newsletter from RARE-e-CONNECT. We will comply with your request(s) as soon as possible.

External links

The platform contains links to third sites for the purpose of allowing users access to more information about each disease. The provision of additional disease-related information is consistent with the purposes of the RARE-e-CONNECT platform, however the content provided in these links does not fall under the responsibility of RARE-e-CONNECT. Please keep in mind that once you visit this external link, you accept that your activity is subject to the privacy policy of the destination site.

The presence of these links on the RARE-e-CONNECT site does not signify endorsement of the information by RARE-e-CONNECT, its administrators or sponsors.

RARE-e-CONNECT social media

We maintain social media pages which do not process any other personal data other than the ones that users willingly share with the public.

Users can contact the administrators of our webpages via private messaging. When our administrator receives messages that contain personal data of natural persons, those are kept confidential and are only used for the purpose of communication.