Opportunities to Raise Awareness of Patients with Rare Diseases in Bulgaria // Възможности за повишаване информираността на пациенти с редки заболявания в България

The dissertation aims to study the level of awareness of patients with rare diseases in Bulgaria. The contributions are based on the results of a survey conducted primarily for the dissertation at the Expert Center for Coagulopathies and Rare Anaemia in Varna. Patients with rare diseases suffer from a lack of sufficient information available from the doctor who diagnosed them. There are not enough training seminars organized in the country. There is a lack of literature in accessible language and reliable online patient data sources. Creating a model of stakeholders involved in improving the awareness of patients with rare diseases describes who they are, their role, and the need for additional information to help raise awareness about those affected. An algorithm has been developed to improve the awareness of patients with rare diseases, which presents the stages that patients go through in order to reach a good level of health literacy and awareness in relation to their rare disease. The dissertation is based on the model of a social platform with mobile applications for patients with rare diseases. The main concept of this model is to store information, build a personal profile of the patient and facilitate the consultation process with the attending physician and other medical professionals. Rare diseases require a unique and individual approach to improving the quality of life of those affected.

Grantor dc:publisher

Medical University of Varna

Year dc:date

2022

Authors dc:creator

• Yordanova, Marina
• Йорданова, Марина

• rare diseases
• awareness
• health literacy
• Икономика и управление на здравеопазването / Healthcare Management

Repository record dc:identifier

http://repository.mu-varna.bg/handle/nls/2459

OAI identifier oai:identifier

oai:repository.mu-varna.bg:nls/2459