Project activities & results

Project management

The Mutualité chrétienne Verviers-Eupen (MCVE), the lead partner of the project, ensures the global coordination and management of the project with the support of the experienced team from its umbrella organization, the Alliance Nationale des Mutualités Chrétiennes (ANMC).

The EMRaDi Steering Committee, which comprises all the partners, meets at least every three months to evaluate the project implementation, share information and coordinate the interconnection of all activities.


Our communication strategy focuses on the needs of our main target groups:

  • Rare disease patients and patients organizations
  • Health professionals
  • Health insurance providers
  • Citizens
  • Public authorities

Through our website and other media, we inform our target groups of our events and publications. 

Go to the events page to learn more about our communication activities

WP1 - Evaluation of supply and demand in the field of rare diseases in the Euregio Meuse-Rhine

This Work Package, led by Maastricht University, will focus on:

  • The need and demands of EMR rare disease patients
  • Legal and financial aspects of the assistance available for EMR rare disease patients.

The needs assessment is based on a quantitative analysis of 50-60 rare diseases; a report will be drawn up on these rare diseases and the situations of patients suffering from them in the EMR (including legal and financial aspects). In addition, a review of the literature on the needs and demands of rare disease patients and their relatives will be conducted. These analyses will take into consideration cross-border care mobility, European Union policies and in particular the national rare disease plans of the three participating countries.

This Work Package aims to evaluate the supply and demand in the field of rare diseases


WP2 - Field analysis of existing rare disease patient pathways

The core concept of a rare disease patient pathway encompasses all the steps from the first symptoms experienced by the patient, along his or her path through the health system towards (hopefully) a fast, successful diagnosis and including every aspect of the care – whether organizational, medical, social, psychological, legal and/or vocational) – to finally ensure the patient the best possible quality of life.

In order to develop organizational models for the management of rare diseases in border regions and to draw up patient-oriented recommendations, this Work Package, led by the Mutualité Chrétienne and Solidaris-UNMS, will focus on

  • identifying the difficulties patients encounter to
    • obtain a diagnosis,
    • find a treatment and the necessary non-medical care,
    • find health professionals,
    • organize their daily lives
  • the financial, cultural, linguistic and geographical barriers which may hamper their national and cross-border care.

The project partners will meet patients, relatives and health professionals to gather the information through interviews and focus groups.

  • Are you or is one of your relatives affected by Chronic myeloid leukemia (CML), Duchenne muscular dystrophy, Galactosemia (type 1), Huntington disease, Phenylketonuria, Polycythemia vera (PV)/Vaquez disease, Rett syndrome or Silver-Russell syndrome?
  • Are you involved in the care of rare diseases patients affected by one of these diseases?
  • Do you wish to help us identify the difficulties rare disease patients encounter on a daily basis?

Please contact us to participate in our study by filling in the participation form here.


The outcome of this Work Package will be a better evaluation of the needs and of the existing rare disease patient pathways in the Euregio Meuse-Rhine for the eight selected rare diseases.

If you wish to obtain more information about this study, please do not hesitate to contact our team by filling in the subscription form or by sending an email to

WP3 - Development of organizational models for the management of rare diseases in the Euregio Meuse-Rhine

This Work Package, led by Maastricht University, aims to identify and develop patient-oriented models of good practice for rare disease patient pathways within and across the different regions of the EMR.

  • First, a generic organizational model for the management of rare diseases in border regions will be developed.
  • Taking into account the specific situation in the EMR and the three national plans on rare diseases, specific EMR organizational models for the management of selected rare diseases will be developed.
  • Finally, based on the experiences in the EMR with the models, recommendations for national and European developments will be formulated.

As an outcome, three variations for organizational models of good practice for the management of rare diseases will be available at the end of the project:

  • A general model for future application
  • A model for use in the EMR for selected rare diseases
  • A European (Union) model for use in national and European (Union) border settings

WP4 - Networking, training and exchanges of expertise among health professionals

This Work Package is led by the University Hospital of Aachen and its Centre for Rare Diseases (UKA/ZSEA).

In five activities, the cooperation between the participating university hospitals will be substantially improved and the exchange of patients optimized. This will be done in close cooperation with the other project partners and stakeholders.

On the basis of an exchange of information, common practices for diagnosis and care will be drawn up which will lead to better procedures for the exchange of human material, files and – last but not least and most important – patients.

Exchange programmes, information sessions and communication tools will result in:

  1. a deeper exchange of knowledge between the participating hospitals and
  2. increased awareness and information among Euregio Meuse-Rhine Health professionals and patients.

We are aiming for a substantial decrease in the time to diagnosis for patients with the rare disease(s) selected, as this is one of the major problems perceived in the field. Furthermore, the number of patients crossing the border will increase, as will the number of GPs making referrals to CHU Liège, MUMC+ and UKA/ZSEA as specialised centres for rare diseases.

WP5 - Patient involvement and public awareness

VSOP (Vereniging Samenwerkende Ouder- en Patiëntenorganisaties voor zeldzame en genetische aandoeningen), the leader of this Work Package, will set up a Patient Sounding Board (PSB) including: Achse (Germany), RaDiOrg (Belgium) and a patient representation from the eight rare diseases selected in the EMRaDi project. Three yearly meetings are planned, in addition to regular contacts and teleconferences. In consultation with the PSB, VSOP will:

  • Cooperate with, advise and empower patients (organizations) regarding their role in medical research, health care policy, quality of care, cross-border health care and the patient’s own role in his/her disease management.
  • Interact with the project partners to include the patients perspective in all EMRaDi project activities.
  • Interact with other stakeholders: medical professionals/centres, health insurance providers and policy makers in the Euregio Meuse-Rhine in the field of awareness-raising, exchange of information, best practices and networking. This will take place through interaction with partners from the Work Packages 3 and 4 (organizational models and networking professionals).