Διαβάστε το κείμενο αυτού του ιστότοπου στα ελληνικά (Read this page in Greek)
The current Cypriot Strategy for Rare Diseases was published by the Ministry of Health of Cyprus in 2012. The strategy was drafted by a Technical Committee appointed by the Ministry of Health, with the participation of relevant stakeholders from healthcare, social services, public authorities, and patient representatives, including the Cyprus Alliance for Rare Disorders (CARD).
To date, the National Committee for Rare Diseases is tasked with the evaluation and the revision of the National Strategy. CARD actively participates in the Committee with a permanent member.
Key highlights of the Cypriot Rare Disease Strategy
The Cypriot National Strategy focuses on the pillars below:
- Prevention
- Early diagnosis and treatment
- Supportive care, Social Welfare, Inclusion
- A national rare disease registry
- Research
Expert Advice
Cyprus expert centres participate in 11 European Reference Networks for rare diseases. As regards counselling for patients and relatives, Cyprus Alliance for Rare Disorders facilitates a national support programme through its Social Support Services programme consisting of psychologists and social workers.
National rare disease healthcare pathways
There is no national rare disease healthcare pathway at this moment because the accreditation of National Centres of Excellence/Expertise is still in process. It is expected that upon the completion of the accreditation process rare disease pathways will be formed.
National registry
There is no available national comprehensive rare disease registry. The available registries are for: thalassaemia, cancer/haematologic malignancies, kidney diseases, hyperlipidaemia and diabetes. It is expected that the completion of the patient’s e- file will accommodate the formation of integrated registries.
Scientific research
There are no specific research programmes for rare diseases in Cyprus, apart from individual efforts from some centres (e.g. Cyprus Institute of Neurology and Genetics). EU-level research and funding is coordinated through the ERDERA project.
The role of Cyprus Alliance for Rare Disorders (CARD)
CARD is actively involved in the National Committee for Rare Diseases and has been also acknowledged as the official organisation in Cyprus for providing information regarding Rare Diseases through a Memorandum of Understanding between the Ministry of Health and CARD that was signed in 2019.
Relevant resources:
- Cyprus_RD National Strategy 2012_Greek
- EUROPLAN_2013_Cyprus National Conference_Report_English
- EUROPLAN_2018_Cyprus National Conference_Report_English
National contact
Cyprus Alliance for Rare Disorders (CARD)
http://raredisorderscyprus.com/
card@raredisorderscyprus.com