The European Rare Diseases Research Alliance (ERDERA)

The Joint Action on Integration of ERNs into National Healthcare Systems ('JARDIN') is collaborating with the ERNs in the "development of model (reference) care pathways for identified RDs or groups of RDs which takes into account a patient-centred holistic and integrated approach.

This involves mapping of patients' care trajectories by leveraging the expertise collected from the Networks and patient representatives, to inform the design and development of ERN care pathways. Throughout the 3 years of the Joint Action, JARDIN is planning to support the development of more than 10 pathways, which may be for individual conditions or for a thematic group of conditions.

JARDIN is a Joint Action (JA) that was born with the aim to grow as a bridge between European Reference Networks and national healthcare systems. The vision is to put people living with rare diseases or complex conditions at the centre of care, and aims to make the care pathway clear and easily accessible, through the promotion of the work of European Reference Networks.

Activities will include identification and exchange of best practices, development of concrete recommendations, guidelines, and toolboxes suited for the needs of all Member States (taking into account the different preconditions, such as size and population, economy, and structure of the respective healthcare system), as well as support of capacity building and performing pilot implementation steps on different levels in MS in the proposed fields of action.

This Joint Action, co-funded by the European Union, is part of a commitment to improve the lives of people, to make the so-called 'patient journey' a little easier and more accessible. Therefore, JARDIN's mission is to improve accessibility to European Reference Networks by integrating them into National Healthcare Systems, and to make a real impact.