Last updated: December 2019
RARE-e-CONNECT.eu 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.
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
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.
In accordance with applicable data protection laws and regulations, you can access to, rectify or restrict the processing of your Data.
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.
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.
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.