Specialized Social Services Offered to Individuals Living with Rare Disease in the World

Abstract

Rare diseases, defined as diseases seen in fewer individuals when compared to the general population, involve about eight diseases and new diseases are being added every day. In general, rare diseases characterized by lack of scientific knowledge, diagnosis and treatment are known to be serious chronic diseases.

Having a rare disease is considered as a process with many physical, psychological, economic and social influences that must be tackled in many areas for patients and their relatives. Psycho-social support services are therefore important to help patients and their families manage the day-to-day difficulties of the illness. respite care services In this study, therapeutic recreation programs, adapted housing, resource centers EUCERD (2012) 's report of listed specialized social services provided in the health sector can make use of rare diseases in Turkey with psycho-social support services will be attempted to be discussed and compared.