The RARE-e-CONNECT team at the “European Reference Networks” Information Day
The creation of the European Reference Networks is perhaps the biggest recognition by the European Union of the role and power of interactive technology to facilitate the exchange of knowledge and medical expertise in the diagnosis and effective management of very rare or low prevalence diseases. The area of diagnosis and management of rare diseases faces particular challenges since the medical knowledge and expertise required is predominantly scattered across large European countries with a large population size.
Cyprus participates in the ERNs with the Nicosia Thalassemia Center and the Institute of Neurology and Genetics Cyprus, which participate as full members, and an open call for participation of centers as co-operating members is expected soon. The call was released in April 2019.
On January 14, 2019, the Cyprus Alliance of Rare Disorders in collaboration with the Ministry of Health, the National Committee for Rare Disorders and the University of Nicosia Medical School organized an information campaign on the EDAs, their role and importance with invited speakers, political figures, the medical community, members of organized patient groups and other stakeholders.
During the event, the RARE-e-CONNECT team had the opportunity to present their work and objectives and to personally discuss with the EURORDIS Special Advisor on ERNs Matt Johnson.
We formally begin our work to promote the practice and culture of teleworking, telecollaboration and tele-education in Cyprus to tackle the absence of accumulated knowledge and expertise in the country with regards to newly emerging, very rare or low frequency, complex diseases – a challenge particularly relevant to small EU countries as a direct derivative of their small population size.
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