RARE-e-CONNECT.eu: 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 RARE-e-CONNECT.eu platform, which is intended for both Healthcare Professionals and individuals or families living with Rare Diseases.
The goals of the platform are to promote: