Project name: Joint Action on integration of ERNs into national healthcare systems (JARDIN) - Integration of ERNs into national healthcare systems

Project start date: 1. 2. 2024
Project completion date: 31. 1. 2027
Project Budget: a total of EUR 14,999,990.09, of which EUR 440,026.80 for VFN (+ EUR 110,540.63 co-financing from the Slovak Republic)
Project guarantor: Clinic of Pediatrics and Hereditary Disorders of Metabolism (KPDMP), principal researcher prof. MD Pavla Doležalová, CSc.
Project Registration Number: 101129863

Project brief:

The project was supported by the EU4Health program within the call EU4H-2022-JA-05 (Direct grants to Member States' authorities: support ERNs integration to the national healthcare systems of Member States).

The project will be implemented by an international consortium including 28 entities from the public health sector (the project coordinator is the MEDIZINISCHE UNIVERSITAET in Vienna, the partners are usually the ministries of health of individual states or other substantively relevant institutions and hospitals under the direct management of these institutions). In the case of the Czech Republic, the partner is the General Faculty Hospital, which was nominated for the project by the Ministry of Health of the Czech Republic.

The aim of the project is to support the integration of European reference networks for the treatment of patients with rare diseases (ERN) into national health systems.

Health care for patients with rare diseases is at a different level in the member countries in terms of organization and integration into the structure of national health services. Availability and quality of care are therefore not equal. The purpose of the project is to set common standards for this care and to identify methods of their implementation acceptable across EU member states.

Activities will include the sharing of best practices, concrete proposals and guidelines for better integration of the ERN into the national health care system.

VFN is involved in the project as the main researcher of the key activity "Possibilities of national support for providers of medical care for patients with rare diseases", and also participates in all other general and specific activities of the project. This broad spectrum of involvement is related to the essential role of VFN in national projects in the field of rare diseases.

Abstract in English:

European Reference Networks (ERN) are multinational networks of highly specialized healthcare providers (HCP) across Europe in thematically coherent medical domains, addressing rare or low-prevalence complex diseases requiring exceptional concentration of expertise and resources. There are currently 24 ERNs providing virtual expert consultations for patients from all member states (MS) and Norway, as well as supporting knowledge generation, professional training and education, and research. In this project, we aim to enhance the impact of the ERN even further by addressing all aspects of their better integration into healthcare systems in MS. This will include improving national governance of ERN-HCP, quality assurance models, patient pathways and ERN referral systems, supporting the formation of national reference networks and undiagnosed diseases programs or equivalent strategies interlinked with ERN, improving data management, aiming to finally achieve full interoperability of regional, national and European health data sources, and identifying national support options for ERN-HCP. Furthermore, we will develop strategies for systematic dissemination of information on the ERN, with a specific emphasis on patients as well as the medical community. A main focus will be to ensure the sustainability of the proposed actions and implementations, which we propose to integrate into updated national plans and strategies for rare diseases in MS.

Press Releases:

• February 29, 2024 | Press release for the opening meeting