In the EMR-region approximately 300.000 people, mostly children, suffer from what in medical terms is labeled as a ‘rare disease’. A rare disease is a disease diagnosed to less than 1 on 2.000 people. Patients, but also health organizations, knowledge institutions and health insurers often experience difficulties in giving or getting the correct diagnosis, treatment and care taking.
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.
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.
