RARE-e-CONNECT

A secure environment for collaboration and knowledge sharing on
rare and complex diseases within Cyprus and abroad.

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Coming soon...

Rare Disease Communities

RARE-e-CONNECT communities* are secure spaces for knowledge and resource sharing between Healthcare Professionals and between Patients, respectively. 

Each community represents a group of diseases organised according to the organ or organ complex they primarily affect, or its cause (where it is known).

There are more than 6000 registered rare diseases worldwide.

* Healthcare Professional Communities are not accessible to patients or vice versa.

#RarePatientsSHARE #ExpertsGetTogether
Communities

Healthcare Teams

Virtual spaces where Healthcare Professionals can meet at mutually convenient hours. Time and space don’t have to stand in the way of effective collaboration and coordinated care.

  • Schedule single- or multidisciplinary meetings with colleagues at a time of convenience
  • Discuss patient cases with colleagues to support your decision-making and/or coordinate care
  • Utilise real-time and/or asynchronous communication for any other professional purpose
Teams

Key features

Specialist repository

Now both patients and healthcare professionals can consult an extensive repository of specialised centres by rare disease group and start new collaborations.

Online Communities

Whether you are a healthcare professional wanting to discuss patient cases or a patient looking to share and find support in other patients or family, now you have a secure space to do so. Just pick and join the communities you are interested in.

Healthcare Teams

Schedule meetings with colleagues from the same or different disciplines to discuss patient cases, coordinate treatment and support each other for effective decision-making. Multidisciplinary care made easy and practical.

Webinars

Attend or co-organise online educational seminars to build and disseminate knowledge on rare and complex diseases.

Resource library

Stay updated on the latest publications in the field and share important resources with colleagues. Contribute in building a repository of important literature on rare and complex diseases.

Patient Stories

Break isolation, find support and exchange best practices on diagnosis, management and everyday living with the disease. Share your experiences with other patients in Cyprus and the world and aware the public about the rare.

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The Project POST-DOC/0916/0222 is co-financed by the European Regional Development Fund and the Republic of Cyprus through the Research Promotion Foundation