Partners

The project is an association of eight partners with many years' experience in cross-border healthcare and European projects, including the key players in the field of rare diseases. The lead partner of the project is the Belgian health insurer, Mutualité chrétienne Verviers-Eupen.

The aim of this patient-oriented project is to bring together all major stakeholders in the field of rare diseases in the Euregio Meuse-Rhine.

The picture in the Euregio Meuse-Rhine varies greatly at the moment, with some institutions working together very well and others not achieving an adequate level of cooperation. Bringing them all together will be crucial for success of this project. It will also pave the way for other future initiatives.

 Hasselt  Aachen  Maastricht  Liège  Eupen

Lead partner of the project: Christian Health Insurance Fund Verviers-Eupen

Mutualité chrétienne Verviers-Eupen/Christliche Krankenkasse Verviers-Eupen

The MCVE (Mutualité chrétienne Verviers-Eupen) is a regional branch of the Christian health insurance fund in Belgium and has its headquarters in Verviers.

As a health insurance provider, MCVE is a key player in the Belgian compulsory health insurance system. MCVE helps the patients on their medical and non-medical pathway on the local basis, particularly related to financial and administrative issues.

Through its regional and cross-border actions, it has developed a large network and close cooperation with other health insurance providers, healthcare providers and hospitals, integrated care services (such as homecare, convalescent home, professional integration services, etc.) as well as with patient organizations. MCVE is developing specific actions to support general practitioners (major players in the EMRaDi project). MCVE has a specific service for cross-border issues facing its members in the German-speaking community. Close cooperation has existed for 20 years with the following Dutch and German health insurance providers: CZ and AOK Rheinland/Hamburg. MC Verviers-Eupen, MC Liège and CM Limburg are important regional relays in the Euregio Meuse-Rhine for patients and health professionals.

University Hospital Aachen with the Centre for Rare Diseases Aachen

Universitätsklinikum Aachen mit dem Zentrum für Seltene Erkrankungen Aachen

By founding the Center for Rare Diseases Aachen (ZSEA) in 2014, the University Hospital Aachen (UKA) made a fundamental commitment to the diagnosis, treatment, care, research and education in the field of rare diseases.

The centre was set up on the basis of the National Action Plan for People with Rare Diseases and up on existing activities in several fields of rare disease and cross-border activities (e.g. with MUMC+).

  • The Center currently has nine Patient Care Subcenters in different fields of rare diseases, all with experienced personnel, high-quality equipment and optimised processes for patient care.
  • Furthermore, the Center offers a guide for patients without clear diagnosis. These cases can – if appropriate – also be discussed at interdisciplinary case conferences, often leading to new possibilities to help the patients.
  • In addition, the (Sub)centers maintain mutual contacts with many relevant patient organizations and self-help groups. These contacts increase in number every year.

Maastricht University Medical Center + / Academic Hospital Maastricht

Maastricht Universitair Medisch Centrum + / academisch ziekenhuis Maastricht

MUMC+ is a pioneer in the field of European cross-border hospital cooperation: its first exchange of patients and staff took place in the late 1980 and has since been continuously intensified.

  • Key elements of the medical cooperation strategy are “centre of excellence”, “complementarity” and “networks”.
  • In the field of rare diseases, MUMC+ comprises a number of officially recognised and accredited Centres of Expertise.
  • MUMC+ shares its experience with the other partners in this project, which can be used in order to improve quality of care for patients with rare diseases in the Euregio.

University Hospital of Liège

Centre Hospitalier Universitaire de Liège

As a university hospital, the CHU Liège takes care of many patients with rare or very rare diseases. The hospital has in-depth experience in genetic diseases as it hosts one of the Belgian Centers for Human Genetics.

The hospital is also very active in the fields of rare cancers (including hematological diseases), neurological diseases, inborn errors of metabolism, rare renal and endocrine diseases and developmental defects.

The doctors from the Center of Genetics have contacts with the other hospitals in the region (Eastern Belgium) for genetic counselling and diagnosis. The CHU Liège also works closely with the other Belgian Centers of Genetics.

Maastricht University

Universiteit Maastricht

The Department of International Health (IntHealth) is a young department founded in the year 2008 as the former Faculty of Health Sciences (now FHML) realized the need for a European orientation in health research. IntHealth was established in order to reflect the university's European perspective on research and to acknowledge that in the modern world, public health requires a multidisciplinary approach and multilevel cooperation to face the challenges of today and tomorrow, such as the care of patients with a rare disease. IntHealth’s mission is to place local, regional, and national health developments into a wider European and global perspective. The Department of International Health therefore emphasizes that good governance mechanisms in public health and healthcare need to be a focus of attention. A key feature of IntHealth is the provision of education and research in line with the European dimension and vision of health. The department is active in European projects which are related to the education and research in health.

IntHealth has published widely on cross-border care issues and is seen as a locus of expertise around European policies in public health and healthcare. Research projects at the Department of International Health often focus on the cross-border setting. Recent research topicshave included Patient Rights in Europe and a project on the National Contact Points both in the light of the cross border directive. The department has strong interdisciplinary links with other faculties of Maastricht University, including the Faculty of Law regarding European law and the Faculty of Humanities and Sciences regarding innovation management.

As regards the profile of IntHealth, the institute has the capacity and experience to apply tools of (comparative) policy analysis, needs assessment and organizational modelling to various levels of governance impacting on the regulation, financing and provision of rare disease treatment in the Euregio Meuse-Rhine.

National Alliance of Health Insurance Funds

Alliance Nationale des Mutualités Chrétiennes (ANMC)

As health insurance provider, ANMC is a key player in the Belgian compulsory health insurance system. ANMC works to contribute to administrative and regulatory developments, inform patients, promote good practices, set up a health monitoring system, anticipate changes in the health sector, develop partnerships with health providers, etc.

ANMC has developed expertise in healthcare data analysis for public health purposes as well as in cartography and focus groups.

The ANMC Research & Development and the European Affairs department as well as the Medical Directorated  will share their expertise in the field of rare diseases to ensure that the project is in line with the Belgian national rare disease plan and will propose coherent solutions for national and European developments in order to promote better access to cross-border healthcare.

ANMC brings together regional health insurance providers (the so-called mutualités) throughout Belgium, including Verviers-Eupen (lead partner of the EMRaDi project), Liège and Limburg. This network is a local relay for information and awareness-raising actions.

National Union of Socialist Health Insurance Funds

Solidaris - Union Nationale des Mutualités Socialistes (UNMS)

Mutualités Socialistes (UNMS)/Solidaris is a key player in the compulsory health insurance system in Belgium.

UNMS's priorities are:

  • anticipating changes in the sector,
  • developing partnerships with health providers,
  • strengthening the role of management controller at health insurance funds,
  • contributing to and facilitating administrative and regulatory developments,
  • informing patients,
  • promoting good practices among our affiliates,
  • setting up a socio-health monitoring system,
  • training workers in the social and health sector.

Solidaris is convinced that cross-border cooperation brings more value for patients and health professionals and increases mobility, and it has been involved in the development of cross-border projects since the early 2000s under Interreg I - II - III - IV.

Several departments such as R&D, European Affairs and the Medical Directorate will contribute to this project. They will share their expertise and knowledge in the field of rare diseases to ensure that our project is in line with the Belgian national plan, and they will propose coherent solutions for national and European developments in order to promote better access to cross-border health care.

Dutch national patient alliance for rare and genetic diseases (VSOP)

Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP) voor zeldzame en genetische aandoeningen

VSOP is the Dutch national patient alliance for rare and genetic diseases, with 70 (national and some European) member patient organizations. Based on its competences and experiences, VSOP is able to contribute to the project as follows:

  • Knowledge of patients’ (unmet) needs and experiences (patients’ perspective);
  • Biggest developer of quality instruments for patient-centred, integrated care in the Netherlands;
  • Large network of relevant stakeholders (government(al) bodies, politicians, health care providers, health insurance providers and pharmaceutical companies);
  • Involvement in approx. 90 current projects/activities (incl. EU-projects);
  • Experience in the formal accreditation of Dutch Centres of Expertise (CoE);
  • Catalyst in the development of European Reference Networks (ERN’s);
  • Participation in various governmental policy councils/committees;
  • Involvement in policy to improve better access to cross-border healthcare.

Associated partners

The following institutions support the EMRaDi project as associated partners:

 

 Allianz Chronischer Seltener Erkrankungen (ACHSE) (DE)

 

 AOK Rheinland/Hamburg (DE)

 

 CZ (NL)

 

 Jessa Ziekenhuis (BE)

 

 Mutualités Libres (BE)

 

 Rare Diseases Organization Belgium (RaDiOrg) (BE)

 

 Universitätsmedizin Mainz (Institut für Humangenetik) (DE)

 

 Ziekenhuis Oost-Limburg (BE)