Project objectives

The EMRaDi project – Euregio Meuse-Rhine Rare Diseases – has three main objectives:

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

In order to realise these objectives, field activities are implemented by the project partners in five Work Packages (WP):

Objective 1

To increase the transparency of needs and availability of services in the field of rare diseases in the EMR

WP1: Evaluation of supply and demand in the field of RD in the EMR

    Objective 2

    To develop EMR models of RD patient pathways in order to draw up patient-oriented recommendations in synergy with national and European developments

    WP2: Field analysis of existing RD patient pathways

    WP3: Development of organisational models for the management of RD in the EMR

    Objective 3

    To improve the network of health care providers, health insurance providers and patient organizations and to raise (public) awareness of rare diseases

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

    WP5: Patient involvement and public awareness