Rare Diseases: What are they?

Τα 6000-8000 περίπου νοσήματα που υπάρχουν σήμερα καταγεγραμμένα σε ευρωπαϊκές βάσεις δεδομένων όπως η Orphanet (Όρφανετ), οι οποίες επηρεάζουν ένα μικρό μόνο ποσοστό του πληθυσμού της κάθε χώρας της Ευρωπαϊκής Ένωσης.  

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What needs does RARE-e-CONNECT respond to? Utilising networking, tele-collaboration, e-learning technologies to produce national benefit in rare diseases

For Healthcare Professionals managing rare cases and for patients seeking communication with other patients for information sharing.

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

The effective management of such genetic, inherited and multiorgan diseases requires networking, multidisciplinary collaboration and good coordination between Healthcare Professionals at a national, European and international level. For people living with rare diseases, online research and networking with other patients are ways of dealing with the disease, helping to better understand the diagnosis and its future outlook, combat feelings of fear and isolation and secure the best possible (collaborative) treatment of the disease in general.

Funded by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation, the Cyprus Alliance for Rare Disorders has established the innovative platform, which is intended for both Healthcare Professionals and individuals or families living with Rare Diseases.

The goals of the platform are to promote:

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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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