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Launching the RARE-e-CONNECT for networking, telecollaboration and e-learning in Rare Diseases-Cyprus!

In 2016 we submitted a funding proposal to the Cyprus Research Promotion Foundation for the creation of an innovative platform for electronic networking, telecollaboration and e-learning for Healthcare Professionals and people with rare diseases currently living in Cyprus. Our intention was to enhance the ability to support Healthcare Professionals in the diagnosis and management of Rare Diseases in Cyprus and at the same time give the opportunity to people living with Rare Disorders to connect with others for information, sharing and support. The project received a positive evaluation and was approved in 2018 with a starting date the 1st of January 2019.

Electronic platforms are now a key tool for knowledge sharing and collaboration between geographically dispersed individuals and groups and a valuable alternative for finding solutions to important issues for which progress is hindered because of practical problems such as long distances, such as health, education, information and more. Through such forms of telecollaboration, it is possible to locate and use important knowledge that is scattered in many parts of the world to create new knowledge and new practices. Such platforms are now used across sectors and across countries.

For the health sector in Cyprus and rare diseases in particular, the possibility of electronic collaboration is extremely important as the necessary knowledge and accumulated expertise for the diagnosis and management of very rare or low prevalence diseases, some of which appear for the first time in Cyprus, is dispersed in large international countries with a large population. The European Union is currently tackling this challenge with the creation of the European Reference Networks which highlights the value of European-wide tele-networking and telecollaboration between medical centers with varied levels of expertise.

The RARE-e-CONNECT platform is the first of its kind in Cyprus which provides sustainable solutions to the many challenges that Cyprus, a small EU country faces due to its small population size i.e., absence of accumulated knowledge and expertise for the timely diagnosis and effective of complex, rare or low-prevalence diseases; and resulting negative and often irreversible clinical and social consequences on the patients.

Today and despite the revolutionising advent of technology and the world’s increasing adherence to e-Health, telemedicine and e-learning, telemedicine in Cyprus is characterised by fragmented practices and geographically dispersed services across the country, constituting an informal process which derives from the physician’s initiative and is practiced at his/her discretion at his/her own time and according to the availability of appropriate resources. With regard to tools and resources, the vast majority of physicians in Cyprus seem to still practice very basic forms of telemedicine using standard telecommunication technology like telephones, electronic and regular mail.

RARE-e-CONNECT is a unified platform with specially designed collaborative spaces and e-learning opportunities for Healthcare Professionals and people living with Rare Diseases looking to align currently fragmented and geographically scattered telecollaboration services for clinical diagnosis and management and provide a dynamic tool which will continue to adapt to users’ needs.

In this light and within the nation’s digital transformation and e-governance practices, we believe that the RARE-e-CONNECT project will greatly support both the daily routine of physicians who are required to diagnose and manage rare diseases, as well as the people with rare diseases in sharing knowledge, experience and psychological support.

We invite you to navigate the RARE-e-CONNECT website to find out all about the objectives of this pioneering project in Cyprus.

The official launch date of the full-fledged RARE-e-CONNECT platform is set for November 2019.