JARDIN is an EU-funded Joint Action aimed at integrating the European Reference Networks (ERNs) for Rare and Complex Diseases
into the national healthcare systems of EU member states. These ERNs were established across the EU since 2017 to facilitate specialized healthcare
for individuals with rare diseases.
At JARDIN, our mission is to ensure ERNs are integrated into national healthcare systems across Europe,
focusing on collaboration, innovation and putting patients at the center of our efforts.
We aim to enhance the integration of European Reference Networks (ERNs) into national health systems. This includes developing frameworks for governance and quality assurance specific to rare and complex diseases. We will produce recommendations and implement pilots to enhance national networks, improve coordination and facilitate knowledge sharing both within national systems and with ERNs. We aim to lay the groundwork for sustainable integration of ERNs beyond our initial funding period, ensuring long-term benefits for patients and healthcare systems across Europe.
We focus on creating innovative solutions and pilot projects in care pathways, ERN referal systems, data management, and support options for ERN centres for rare and complex diseases. By analyzing the current situation and identifying key barriers, we will develop recommendations, guidelines, and tools. These solutions will then be tested and demonstrated through voluntary pilot projects
A critical aspect of our mission is to optimize care pathways tailored to patient needs, improving referral systems and enhancing access to specialist advice from ERNs. We focus on improving the management and sharing of health data between ERNs and national infrastructures, respecting the diversity between member states. Our goal is to improve the national support option for ERN centers, including training, resources, and better working conditions, to ensure high-quality care for rare disease patients across Europe.
Data management:
Propose and develop implementable solutions to overcome organisational, technical, and legal barriers to integration of national health systems and ERN data management
Testing and implementing integration solutions in agile mode
National support options for ERN-HCP:
Analyse good practices and mechanisms to provide support to ERN-hosting healthcare providers at national level as well as to individual ERN centres at the hospital level
Based on the analysis, develop specific recommendations for the national support to HCPs in ERN
National care pathways and ERN referral systems:
Development of a model (reference) care pathway for a Rare Kidney Disease
JARDIN Coordinator: Till Voigtländer
Contact: jardin[at]meduniwien.ac.at
Responsible Project Manager at ERKNet:
Valentina Neukel