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Main Problems of Patients with Rare Diseases on the Territory of the Republic of Bulgaria

Marina Yordanova

Abstract

Rare diseases are life-threatening and chronic conditions that occur in a limited number of patients. The problems with this group of patients are related to the lack of knowledge on the part of doctors and patients, which requires the cooperation of all individuals involved.
Rare diseases are a challenge both at European level and worldwide. Taking the issue seriously, all member countries have developed national plans and strategies to organize and plan activities to help and prevent illness. As a difficult and unpredictable area in healthcare, all interested parties are in the position of learners in the process of research and treatment. It is important to build strong relationships between medical professionals, patients and their loved ones, continuous communication and data exchange, trust in the work process to overcome a number of problems and obstacles in the field of rare diseases.
The article presents the author's survey on the attitudes of specialists in the field of rare diseases regarding the main problems of their patients. The aim of the study is to identify weaknesses in the system and to focus on measures to improve the problem-solving process. The analysis and evaluation of these attitudes should be the basis for the creation and implementation of effective changes by health authorities.

Keywords

rare diseases, health problems, patients with rare diseases, orphan drugs, satisfaction

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References

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