The diploma thesis is focused on the topic of Living with patients with rare diseases - Epidermolysis bullosa in the Czech Republic is focused on identifying the role of individual actors involved in financing support for patients and evaluating the significance of their roles. Patients suffering from rare diseases have a very specific situation in terms of financial contributions from the public budget, as their situation is not common. The diploma thesis is focused on the role of public sector actors, the non-profit sector (the role of Debra) and patient families in financing treatment and necessary care. It examines and compares the share of funding support for these individual actors, especially focusing on the share of funding from the public sector and the non-profit sector, where the majority is occupied by Debra, which focuses on supporting patients with butterfly wing disease. The thesis examines whether the role of the public sector in financing is sufficient and how significantly its role is complemented by the non-profit sector. Subsequently, the quality of life and social construction of patients in the Czech Republic is evaluated, as well as the provision of care and financial assistance for their illness. The situation of patients will be compared with the situation in other European...
| Identifer | oai:union.ndltd.org:nusl.cz/oai:invenio.nusl.cz:438142 |
| Date | January 2021 |
| Creators | Pazderová, Natálie |
| Contributors | Kotherová, Zuzana, Tomášková, Vladimíra |
| Source Sets | Czech ETDs |
| Language | Czech |
| Detected Language | English |
| Type | info:eu-repo/semantics/masterThesis |
| Rights | info:eu-repo/semantics/restrictedAccess |
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