Project code: V3-2359
Tender: Public tender for the selection of research projects of the Target Research Program "CRP 2023"
Leading partner: University Medical Centre Ljubljana, Clinical Institute for Genomic Medicine
Partner: University of Novo mesto Faculty of Health Sciences
Total project value: 89,000.00 EUR
Funding information: The project is co-financed by the Slovenian Research and Innovation Agency (ARIS) from the state budget (50%) and co-financier Ministry of Health (50%)
Start: 1. October 2023
End: 30. September 2026
Project manager: dr. Karin Writzl
Contact person: dr. Karin Writzl, karinwritzl@gmail.com, 00386 41 860 929
Project description:
The main objective of the Innovative Education in Rare Diseases project is to improve the knowledge of all stakeholders in the field of rare diseases (RD) by implementing educational modules for people with RD and their families, for the general public, for students of health sciences, and for doctors and other health professionals, and thus to contribute to a better visibility of the field of RD, faster identification of RD in individuals, better care for people with RD, and participation of all stakeholders in the promotion of the field and in research into the diagnosis and discovery of new therapies for RD. We have designed an approach to systematically analyse best practices of international initiatives in the field of education on RD for all stakeholders and to build on them with innovative solutions adapted to the Slovenian context. To this end, we will bring together key health and education institutions in a working group that will shape the content and timing of the Innovative Education in Rare Diseases project.
We will develop a website and add multimedia educational content. The website will be a hub of information and educational content on RD for all defined target groups (lay and professional public) in Slovenia and will link to websites with quality foreign information and educational resources in the field of RD. As no needs in the field of education on RD have been identified in the Slovenian context, we will explore the knowledge of the field of RD and the need for education of different stakeholders in the Slovenian context by preparing and conducting surveys of different stakeholders (people with RD and their family members, nursing students and health professionals). The results of this survey will serve as a basis for the development of educational modules for different stakeholders:
The Innovative Education in Rare Diseases project has the potential to make a significant contribution to Slovenia's competitiveness by making it one of the first countries with a university-based education programme in RD. The project will contribute to raising awareness of RD among the professional and lay public, which will help to improve the quality of health care and treatment outcomes for people with RD, reduce the cost of health care and reduce stigma and discrimination against people with RD.
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