“EMRaDi” stands for Euregio Meuse-Rhine Rare Diseases. This project is part of the European Union INTERREG V-A Euregio Meuse-Rhine programme. The project is co-funded by the European Union, the European Regional Development Fund (ERDF) and regional authorities in the three countries of the Euregio Meuse-Rhine (Belgium, Germany and the Netherlands).
Health professionals and health insurers have been cooperating in the border regions of the Euregio Meuse-Rhine for many years. Thanks to this long experience in cross-border healthcare, they have decided to join forces in the specific field of rare diseases. The EMRaDi project brings together health insurers, university hospitals, patient associations and a university.
The principle of cross-border cooperation in the Euregio Meuse-Rhine was legally established in 1976. Since 1991, the EMR has been a foundation made up of five sub-regions:
In the Netherlands:
The principal mission of the EMR is to promote the integration of the population in the border regions by reducing the obstacles to cooperation and the “border effect”, whetger these borders are economic, social, cultural or linguistic.
At the end of the 1980s, the European territorial cooperation led to the establishment of the INTERREG I programme. This programme made a decisive contribution to the development of the cross-border cooperation in the EMR.
INTERREG is an European Commission initiative financed by the ERDF (European Regional Development Fund). The programme aims to strengthen economic and social cohesion in the European Union through cross-border (part A of the program), transnational (part B) and interregional (part C) cooperation. The EMRaDi project is part of the 5th INTERREG program, part A (INTERREG V-A EMR).
The Management Authority for the INTERREG V-A EMR programme is the Dutch Province of Limburg : they are responsible for the implementation, the day-to-day management and the follow-up of the INTERREG V-A EMR programme covering the period 2014-2020.
The field of rare diseases is a good example of a context in which EU collaboration has a clear added value. Combined efforts are needed to reduce the inequalities between rare disease patients and patients with common diseases.
During this three-year project (01-10-2016 to 31-03-2020), eight partners operating within the Euregio Meuse-Rhine (EMR) are joining forces in order to achieve substantive improvements in integrated care for rare disease patients. These partners include:
Mutualité Chrétienne (lead partner) and Solidaris
Liège, Aachen and Maastricht
VSOP (Vereniging Samenwerkende Ouder- en Patiëntenorganisaties voor zeldzame en genetische aandoeningen)
This EMRaDi project is innovative in the sense that it is a patient-oriented and cross-sectoral project. The consortium of partners includes the major health players who support rare disease patients and their relatives in their day-to-day rare disease patient pathway.
Rare disease patients present health providers and systems with extraordinary challenges.
In the Euregio Meuse-Rhine (EMR), rare disease patients are forced to seek care across borders, within “foreign” healthcare systems. Clarification of available resources (especially appropriate treatment and financial reimbursement) is essential. Joining forces in the EMR is therefore important, despite the challenges of different healthcare systems and languages.
Through the project activities, the EMRaDi project aims to
During its three-year period, the EMRaDi project is focusing its attention on eight rare neurological, hematological, syndromic, metabolic diseases.
The objective is then to use the results obtained for these rare diseases to help groups of patients with other rare diseases and to make global recommendations and bring about developments for the cross-border healthcare of rare disease patients in the Euregio Meuse-Rhine (EMR).
The eight rare diseases are as follows:
Click here for more information on the selection of the diseases.
We will also gather quantitative data in the three Euregio Meuse-Rhine countries on a longer list of 50-60 rare diseases ; this will help produce a better picture of the situation of rare disease patients in our border regions.
The rare diseases concerned are as follows (with the short list of eight rare diseases in bold):