About
The RARE-e-CONNECT platform is co-financed by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation to innovate by providing a secure, friendly and easy to use online environment for the development of national and international partnerships in Cyprus healthcare and patient rare disease community.
There are more than 6000 rare diseases known worldwide.
In Cyprus, some of those diseases appear once or very few times, while it is estimated that there are more than 60000 people with at least one rare disease living on the island.
RARE-e-CONNECT AIMS TO boost the development of national knowledge and expertise on rare or low-prevalence, complex diseases by:
- CREATING secure collaborative spaces for the exchange of specialised knowledge and clinical decision-making support within Cyprus healthcare and across borders.
- EMPOWERING patients to share their own unique perspectives about the day-to-day with the disease, listen and learn from others and contribute to the recognition and visibility of rare diseases at social, national and international level.
- DOCUMENTING web-based collaboration as a sustainable solution for the effective management of rare or low-prevalence, complex diseases and the development of national expertise.
Added value
The numbers of RD patients indicate the prevalence of long term conditions and imply the financial strain on healthcare systems. Up to now, Rare Disorders have been largely left in the margin of mainstream healthcare as small EU country Cyprus struggles to overcome the limitations of specialised national knowledge and expertise on rare or low-prevalence complex diseases and the absence of effective structures for coordinated collaborative work and knowledge exchange with specialised centres in Europe and other countries.
RARE-e-CONNECT research will explore the potential of the proposed technology to promote expert knowledge dissemination, contribute to the reduction of inequalities in accessing facilities and time needed for diagnosis, and in the longer run waive the need for regular patient travelling abroad for health evaluations, contributing thus to the reduction of the underlying financial burden.
The Team
RARE-e-CONNECT for Healthcare Professionals and People living with Rare Diseases:
A radically new Web 2.0 technology to promote knowledge sharing and decision-making support
for the diagnosis and multidisciplinary management of rare diseases in Cyprus.
The Project POST-DOC/0916/0222 is co-financed by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation. The Host Organisation is Cyprus Alliance for Rare Disorders.