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Children's rare diseases – system management from the perspective of the patient's family

rare diseases management of health care and security system socio-economic condition of the family

The author of the article discusses the problem of managing the system of care for a patient with a rare disease in Poland. Systemic solutions in this matter (or lack thereof) determine the socio-economic condition of a family affected by orphanage disease, most often a child. It is not only health care solutions that are at issue here, although they are a priority. A rare disease affects a number of order areas of the patients' life - his or her education, development opportunities, participation in social life. It also has an impact on the life of his family, which in the economic context is starting to generate much more costs, while at the same time increasing restrictions in the sphere of professional activity. The aim of the study is to identify the main needs of patients'; environments in selected aspects of life with rare disease, the satisfaction of which would improve the patient's quality of life and socio-economic condition of his family because the family "suffers" with the disease. The article will use mixed research methods from the group of methods of theoretical research with elements of empirical research (secondary research). Conclusions from the research will be divided into several areas, each of which is important for the condition of a family living in the shadow of a rare disease

E-Wydawnictwo. Prawnicza i Ekonomiczna Biblioteka Cyfrowa. Wydział Prawa, Administracji i Ekonomii Uniwersytetu Wrocławskiego

ISBN 978-83-66066-83-0 (druk) ISBN 978-83-66066-84-7 (online)

10.34616/23.19.125

(Prace Naukowe Wydziału Prawa, Administracji i Ekonomii Uniwersytetu Wrocławskiego) (E-Monografie ; nr 153)

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