The vision of
the committee of rare diseases
The development of a comprehensive strategy to ensure equal access for all individuals with rare diseases to a well-organized system of medical care and social support, enhancing their quality of life and that of their immediate environment.
Mission
The implementation of a strategy to fight rare diseases, with the aim of prevention and early detection, diagnosis, and treatment, as well as providing supportive care, social welfare, and integration of patients. Concurrently, it involves recording rare diseases and promoting research on these conditions.
Actions
First: Prevention, Early Detection
Second : Diagnosis, Treatment
Third : Supportive Care, Social Welfare, Inclusion
Fourth : Recording Rare Diseases
Fifth : Research
Axis Actions
1st Axis Prevention, Early Detection
· Public awareness programs.
· Education and health promotion.
· Introduction of prenatal counseling programs.
· Strengthening the participation of the population in an information program before and during childbirth.
· Education of special population groups.
· Education of health professionals.
2nd Axis Diagnosis, Treatment
· Education and continuous training of health professionals.
· Reinforcement of existing related services.
· Development of new services (prenatal interventional medicine).
· Strengthening and establishing multi-thematic and scientific cooperation.
· Introduction of new population detection programs
· Recognition of existing centers of reference and excellence for rare diseases.
· Networking, European Reference Networks and international cooperation.
· Introduction of practices and legislation for access to necessary therapeutic interventions.
· Awareness raising, information and training of patients and the public.
· Empowerment of patients and their participation in the various actions.
3rd Axis Supportive Care, Social Welfare, Integration
· Provision of psychological support
· Issuance of a special card for patients with rare diseases
· Services offered by the Ministry of Labor and Social Insurance.
· Online patient networking.
· Respite care for caregivers and family of patients with rare diseases.
· Multidisciplinary groups for the holistic treatment of patients with rare diseases.
· Palliative care for patients with rare diseases.
4th Axis Registration of Rare Diseases
· Establishment of a steering committee to establish goals and guidelines.
· Achievability study of the objectives.
· International collaborations.
· Participate in classification/coding review.
· Orphanet Rare Disease List.
· Development of a rare disease file.
5th Axis Research
· Mapping research on rare diseases.
· Creation of appropriate infrastructure to facilitate research.
· Research funds.
· Promoting the participation of Cypriot patients in clinical trials of new drugs.