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EMR Rare diseases (EMRaDi)

Objectives

1) Increase the transparency of needs and availability of services in the field of rare diseases in the EMR

2) Develop EMR models of RD patient pathways in order to elaborate patient oriented recommendations in synergy with national and European developments

3) Improve the network of health care providers, health insurance providers and patient organisations and to raise (public) awareness for rare diseases Long term general aim is to improve the quality of life of these patients.

Context

In the EU, rare diseases are defined as diseases that affect fewer than 5 per 10.000 citizens. Existence of +/- 8000 rare diseases 6 to 8% of persons are afflicted by a rare disease: In the EU : 27 to 36 millions. In DE : 4 millions. In NL : 1 million. In BE 660.000 to 880.000. Rare diseases are a theme of European importance, have a severe impact on society as they are chronic and as they reduce life expectancy and quality,  are difficult to finance and reimburse by the health systems (high poverty risk).

Partners of the project

1. Mutualité chrétienne Verviers-Eupen - MCVE (BE)
2. Universitätsklinikum Aachen mit dem Zentrum für Seltene Erkrankungen Aachen (DE)
3. Maastricht Universitair Medisch Centrum+/cademisch ziekenhuis Maastricht (NL)
4. Centre Hospitalier Universitaire (CHU) de Liège
5. Universiteit Maastricht (NL)
6. Alliance Nationale des Mutualités Chrétiennes - ANMC (BE)
7. Solidaris – Union Nationale des Mutualités Socialistes (BE)
8. Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP, NL)

Associated partners

1. AOK Rheinland/Hamburg (DE)
2. CZ (NL)
3. Landsbond van de onafhankelijke ziekenfondsen (BE)
4. Ziekenhuis Oost-Limburg (BE)
5. Jessa Ziekenhuis (BE)
6. Universitätsmedizin Mainz (Institut für Humangenetik) (DE)
7. Allianz Chronischer Seltener Erkrankungen (ACHSE) (DE)
8. Rare Diseases Organization Belgium (RaDiOrg) (BE)   

More-value of the project for the EMR

By investing in the infrastructure of care for people affected by rare diseases, the EMR seeks to :

  • Reach a high number of citizens in the EMR and increase their quality of life
  • Propose EMR patient pathways with good access to centers of expertise and to integrated care
  • Organize the patient healthcare where the patient needs it
  • Reduce the health expenses
  • More rapidity in the diagnosis
  • Avoid numerous visits to many different doctors
  • Better follow-up and support of patient
  • Best possible healthcare provider, no matter of the citizenship
  • Better and new source of funding and reimbursement of patient
  • Be in the frontline of European development

EMR as a Pilot region

  • Support implementation of Directive 2011/24/EU
  • Concentrate the expertise and create synergy effects in the EMR enjoying specialized university hospital centers and an already existing large cooperation between the institutional health actors (Hospitals, Health Insurers, Universities)
  • Build or improve the networks of clinicians and general practitioners in order to facilitate access to clinical trials for patients within the EMR
  • Open the possibility to new source of funding in research and innovation
  • Have synergy effects and mutualize the costs for research and development / innovation, among others in developments of medicines and equipment of high technology
  • Promote research in fields where the EMR can compete with other regions
  • Serve as a model for other diseases (in research and health management) 

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