Abstract
Characteristics of rare diseases
Highlights
Comprehensive and systematic solving of the problems which are associated with rare diseases is one of the elements of the prevention of social exclusion of patients and their families
It is desirable that, depending on the patient’s condition, the care was conducted in the patient’s home, nursing and care institutions and care and treatment institutions, wards for the chronically ill or nursing homes. Solving these problems should be to a vast extent based on efficient, coherent, consistently carried out program and on the system of institutional activities complemented by social initiatives and efforts, conducting charitable activities, social involvement of nongovernmental organizations, foundations, etc
The primary objective of these organizations is to improve the quality of life of patients with rare diseases, efforts to improve their situation in terms of social, welfare and medical, educational and informative aspects
Summary
Comprehensive and systematic solving of the problems which are associated with rare diseases is one of the elements of the prevention of social exclusion of patients and their families. The primary objective of these organizations is to improve the quality of life of patients with rare diseases, efforts to improve their situation in terms of social, welfare and medical, educational and informative aspects.
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