About EMRaDi

“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.

What is the Euregio Meuse-Rhine (EMR)?

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 Belgium:

  • the Flemish Province of Limburg
  • the Walloon Province of Liege
  • the German-speaking community

In Germany:

  • the Region of Aachen (Zweckverband)

In the Netherlands:

  • the southern part of the Province of Limburg

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.

INTERREG programmes

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.

Why a project on rare diseases?

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:

  • Health insurance funds:

    Mutualité Chrétienne (lead partner) and Solidaris

  • University hospitals:

    Liège, Aachen and Maastricht

  • One university:

    Maastricht University

  • One alliance for rare and genetic diseases:

    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.

Challenges

Rare disease patients present health providers and systems with extraordinary challenges.

  • Due to the specificity of symptoms and the difficulty of diagnosis associated with rare diseases, most patients undergo a long and arduous journey before they even find out that they have a rare disease.
  • Knowledge is often scattered and in many cases, finding the right professional/institution proves very difficult.
  • Such patients legitimately prefer medical treatment and support as near as possible to their home.

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.

Objectives

Through the project activities, the EMRaDi project aims to

  • increase the transparency of needs and availability of services in the field of rare diseases in the Euregio Meuse-Rhine (EMR)
  • develop EMR models of rare disease patient pathways in order to draw up patient-oriented recommendations in synergy with national and European developments
  • improve the network of health care providers, health insurance providers and patient organisations and raise (public) awareness of rare diseases

The  general long term aim is to improve the quality of life of these patients.

Read more about the project objectives and about the activites and results.

Rare diseases concerned by the project

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:

  • Chronic myeloid leukemia (CML)
  • Duchenne muscular dystrophy
  • Galactosemia type 1
  • Huntington disease
  • Phenylketonuria (PKU)
  • Polycythemia vera (PV)
  • Rett syndrome
  • Silver-Russell syndrome

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):

Neurological diseases

  • Amyotrophic lateral sclerosis
  • Becker muscular dystrophy
  • Charcot-Marie-Tooth disease
  • Duchenne muscular dystrophy
  • Epileptic encephalopathy
  • Friedreich Ataxia
  • Hereditary Spastic Paraparesis
  • Huntington disease
  • Landau-Kleffner syndrome
  • Lennox et Gastaut
  • Myasthenia gravis
  • Neurofibromatosis Type 1
  • Neurofibromatosis Type 2
  • Progressive supranuclear palsy
  • Proximal myopathy, PROMM disease
  • Small fibre neuropathy (SFN)
  • Spinocerebellar ataxias type 1
  • Steinert myotonic dystrophy

Hematological diseases

  • AL amyloidosis
  • Aplastic anemia (AA)
  • Chronic eosinophilic leukemia (CEL)
  • Chronic myeloid leukemia (CML)
  • Chronic neutrophilic leukemia (CNL)
  • Eosinophilic MPN with rearrangement of PDGFRA, PDGFRB, or FGFR1
  • Essential thrombocythemia (ET)
  • Hemophilia
  • MPN-unclassifiable (MPN-U)
  • Paroxysmal nocturnal hemoglobinuria (PNH)
  • Polycythemia vera (PV) or Vaquez disease
  • Primary myelofibrosis (PMF)
  • Sickle cell anemia, Drepanocytosis
  • Systemic mastocytosis

Syndromal diseases

  • 22q11.2 deletion syndrome
  • Beckwith-Wiedemann syndrome
  • Kabuki syndrome
  • Noonan syndrome
  • Prader-Willi syndrome
  • Rett syndrome
  • Silver-Russell syndrome
  • Temple Syndrom
  • Turner syndrome

Metabolic diseases

  • Cystinuria
  • Fabry disease
  • Galactosemia (type 1)
  • Gaucher disease
  • Hunter disease, Mucopolysaccharidosis type 2
  • Phenylketonuria
  • Pompe disease, Glycogen storage disease due to acid maltase deficiency
  • Wilson disease

Other rare diseases

  • Idiopathic pulmonary fibrosis (nonneoplastic pulmonary disease)
  • Marfan Syndrome (systemic disease of connective tissue) 
  • Osteogenesis imperfect (rare bone disease)
  • Systemic sclerosis (generalized disorder of small arteries, microvessels and connective tissue)
  • Isolated spina bifida (rare birth defects, rare neural tube defects)
  • Cystic fibrosis, Mucoviscidosis (rare genetic disorder, channelopathy)
  • Alpha-1-antitrypsin deficiency (rare genetic disorders, rare hepatic and respiratory disorders)