A range of organisations in the Euregio Meuse-Rhine cross-border region between Germany, Belgium and the Netherlands have come together in a bid to boost the quality of life of local people with rare diseases. Known as EMRaDi, the project highlights that rare diseases don’t stop at borders. Partners include health insurers, hospitals, patient associations and universities.
- 05 April 2020
The EMRaDi project is a patient-centred project focused on people living with a rare disease. It involves multiple stakeholders and cross-border cooperation, with patients, patient associations, hospitals, health insurers and universities to increase the quality of life of these patients and their relatives.
People with rare diseases often have to travel long distances to access expert healthcare. If a specialist is not available locally, these patients can experience difficulties obtaining a firm diagnosis and subsequent treatment. It is estimated that around 300 000 people in the Euregio Meuse-Rhine region are coping with rare diseases – a situation that also impacts countless relatives and friends.
Barriers to care
The EMRaDi project’s first step to improve this situation was to map the demands and needs of patients, the availability of expertise, and the legal frameworks relating to rare diseases in the cross-border region. After laying the groundwork, the project partners carried out assessments of eight rare disease ‘patient pathways’. Barriers to care were examined before the project team proposed more efficient organisational models for healthcare delivery.
The work was carried out in cooperation with rare disease patients and healthcare stakeholders. To identify so-called patient pathways, the project carried out a field analysis encompassing 81 interviews with patients, relatives and healthcare professionals. The chosen pathways covered four types of disease groups: syndromic, haematological, neurological and metabolic.
In addition, the EMRaDi team focused on networking and training activities for healthcare providers and patient organisations. The project partners devised a ‘patient sounding board’ where patients and their representatives meet to discuss their involvement in issues such as medical research, healthcare policy, care quality and disease management. EMRaDi also gathered quantitative data from the three Euregio Meuse-Rhine countries to create a more comprehensive list of rare diseases.
Raising awareness
Results from the project are being used to help other rare disease groups and will eventually inform recommendations for the development of cross-border healthcare initiatives. The project team can already confirm that its activities have contributed to raising awareness about rare diseases and patient needs. This has been achieved through the organisation of several activities and public events connecting patients, health professionals, health insurers and other concerned stakeholders.
By encouraging networking, and the exchange of information and good practices, organisations that were not collaborating with each other are now doing so – and working on solutions. This will help patients get more guidance on how to access the resources they need and receive faster diagnoses and treatment.
Total investment and EU funding
Total investment for the project “EMRaDi: Euregio Meuse-Rhine Rare Diseases” is EUR 3 372 669, with the EU’s European Regional Development Fund contributing EUR 1 686 335 through the “Interreg V-A - Belgium-Germany-The Netherlands (Euregio Meuse-Rhine)” Operational Programme for the 2014-2020 programming period. The investment falls under the priority “Better public administration”.