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 Rare Diseases Healthcare and Patient Community Cyprus.

Today, there are more than 6000 known rare diseases. Some of them are unique cases or appear very few times in Cyprus where it is estimated that more than 60000 people are living with at least one Rare Disease.

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 complex, rare or low-prevalence diseases and the absence of structures for effective collaborative work and knowledge exchange with specialised centres in Europe and abroad.

RARE-e-CONNECT AIMS TO boost the development of national expertise on complex, rare or low-prevalence diseases by:

  • CREATING secure collaborative spaces for the exchange of specialised knowledge and clinical decision-making support within Cyprus 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 timely diagnosis and effective management of complex, rare or low-prevalence diseases in parallel with the development of national expertise.
RARE-e-CONNECT for Healthcare Professionals and People living with Rare Diseases: A radically new, pioneering Web 2.0 technology for knowledge sharing and decision-making support in rare or low-prevalence diseases in Cyprus.
  • Bridging geographical distances
  • Equalising, stepping up and facilitating access to information
  • Sourcing knowledge, ideas, and experience
  • Enhancing quality education