Medical University – Sofia from 01.01.2024 is part of an ambitious project:Joint action for the integration of European Reference Networks (ERNs) into national healthcare systems (JARDIN), EU4H-2022-JA2-IBA, with a 3-year implementation period .
In connection with the implementation of the JARDIN project, in which MU-Sofia is a partner, on 22.02.2024 (Thursday) a meeting of the project team was held, including representatives of the reference centers for rare diseases at the MU-Sofia with leaders Prof. Sabina Zaharieva, Prof. Ivaylo Turnev, Academician Ivan Milanov and Prof. Ivan Litvinenko. Dr. Petya Stratieva, Ph.D., Chairman of the Board of the Association “Rare Diseases Bulgaria” and Association Retina Bulgaria, as well as Coordinator of the network of European patient advocates from Bulgaria, took a special part. During the meeting, a number of organizational issues were discussed, as well as the distribution of participants according to the work packages.
The main objectives of the project are to increase the influence of the European Reference Networks (ERNs) by better integrating them into the healthcare systems of the EU countries; to improve the national management of the ERNs, to include clinical pathways for patients with rare diseases, to provide support for the creation of national reference networks, to improve the work with databases. An important strategic goal is also the development of strategies for the systematic dissemination of information about ERNs, with special focus on patients and the medical community, as well as ensuring sustainability of the proposed activities and integration into the national programs and strategies for rare diseases in the country.
