Cyprus Alliance for Rare Disorders
The Cyprus Alliance for Rare Disorders (CARD) was founded in 2010 to support the needs of approximately 60,000 patients with Rare Disorders living in Cyprus. CARD’s mission is to ensure that these people are empowered to live a decent and an all-in-all quality life, through active and meaningful participation in promoting existing and developing new health policies for rare diseases at a national, European and international level.
CARD members are both patient associations and individuals who are living with a rare disease but are not part of an association because they are individual cases. CARD establishment results from the need for collective support to patient demands and problem resolution. CARD currently counts 20 member associations and more than 250 individual patients.
CARD works in the forefront of:
- Raising awareness about RD, patient rights and their better service in the newly established national health system via campaigns, info days, press releases, press conferences, online and social networking venues
- Creation of an experts’ network of RD specialists from Cyprus and abroad
- Creation and participation in RD-related committees as these are held in the Ministry of Labour, Welfare and Social Insurance
Nationally, the CARD is an official partner of the Ministry of Health for the purposes of the integration of the European Reference Networks (ERNs) into the national health system. Via this collaboration, CARD is tasked with informing and guiding Cyprus-based patients and health professionals about ERN-related matters and expertise, as well as to the services the MOH provides with regard to cross-border healthcare. CARD also holds active collaboration with the Ministry of Labour and Social Security and other stakeholders on RD-related matters, the national programme for RD, cross-border healthcare etc. Internationally, CARD is an active and official full member of the European Organisation of Rare Diseases (EURORDIS), the Cyprus Federation of Patients’ Associations, the Active Citizenship Network, the International Alliance of Patients Organizations (IAPO).
With the RARE-e-CONNECT platform, CARD is expanding its operations through the development of a full-fledged sustainable platform to support healthcare professionals’ and patients’ knowledge construction on RD by sourcing collective experience from Cyprus, Europe and other countries.