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What needs does RARE-e-CONNECT respond to?

Finding ways to effectively manage the most vulnerable group of rare diseases remains a serious challenge for the health systems of countries, and especially of small countries such as Cyprus.

The effective management of such genetic, hereditary and multiorgan diseases requires good networking, multidisciplinary cooperation and coordination between health professionals at home and abroad.  For the people living with rare diseases, online search and networking with other patients are some effective ways of dealing with the disease, which can help patients better understand the diagnosis and future outlook, combat feelings of fear and isolation and best manage the disease in collaboration with the physician.

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Health Commissioner Stella Kyriakides on networking for progress in Rare Diseases

National and European networking can help overcome challenges caused by limited expertise and geographical barriers. The added value of pooling resources and sharing knowledge on 6,000 different rare diseases is clear. And this is particularly important for small member states like Cyprus where some 60,000 people are affected by Rare diseases [....]. The Cypriot RARE-e-CONNECT platform is an excellent example of networking in practice”, says EU Health Commissioner Stella Kyriakides

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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.

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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.

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