Summary of the day
On 17th February 2020 at the Palais des Congrès in Liège, the partners of the EMRaDi project (Euregio Meuse-Rhine Rare Diseases) presented the results of more than three years of cross-border cooperation to optimize the rare disease patient pathways in the Euregio Meuse-Rhine (EMR).
MEP Pascal Arimont gave the opening speech, stressing the importance of projects like EMRaDi, a project that greatly improved his awareness for rare diseases, and the need to increase funding for cross-border projects in the field of health. Afterwards, Axel Noël (Interreg regional antenna in Liège) argued in favour of more cooperation in the EMR before giving the floor to the project partners, who presented their achievements.
After Caroline Glaude (Verviers-Eupen Christian Health Fund, lead partner) provided a brief overview of the project, Joyce Loridan (National Union of Socialists Health Funds, Belgium) and Clara Noirhomme (National Alliance of Christian Health Funds, Belgium) presented the qualitative study carried out based on 104 testimonies of patients, relatives and professionals that aimed to uncover the day to day reality of RD patients and their relatives. Then, Timo Clemens (University Maastricht) gave an overview of the legal and financial provisions applicable in the EMR and formulated recommendations to ease data exchange and develop telemedicine. Rok Hrzic (University Maastricht) presented integrated care models (from slide 19). Among other things, these studies advocate for a holistic approach  and more cross-border cooperation. They provide solid arguments to introduce “case managers” to provide more support to RD patients and improve care coordination.
To start the afternoon, Vincent Bours (CHU de Liège), Christopher Schippers (UK RWTH Aachen), and Connie Stumpel (Maastricht UMC+) showed how the three university hospitals of the EMR improved not only the cooperation amongst themselves but also beyond, and carried out joint actions to raise awareness, especially among health professionals. Following this, Cor Oosterwijk (VSOP) presented the recommendations formulated by the Patient Sounding Board that were created within the project. He called for higher levels of cooperation between the stakeholders of the three countries and for everyone to make the patient perspective their own.
After these presentations, Caroline Glaude presented the project’s global achievements and recommendations and proposed areas for follow-up (see also the factsheet). Health insurers, patient organizations and university hospitals active in the Euregio Meuse-Rhine signed a Declaration of Intent, undertaking to develop joint actions to improve the quality of life of people with rare diseases and their families.
The day ended with an inspiring exchange of views, not only between two patient representatives –Jan de Jong (Hematon, NL) and Eva Schoeters (RaDiOrg, BE) – and two health professionals - Saskia Bulk (CHU de Liège) and Chantal Mathy (Belgian Health Institute) - but also with the audience, to discuss the EMRaDi results and address the remaining challenges to be tackled in future actions and projects. The panellists promoted the holistic approach, the role of telemedicine and case managers, together with the need for more solidarity at the European level, notably to develop solutions to drug pricing. The important guidance role health insurers (and their social services in Belgium) can also have when they are dealing with patients having a rare disease was also highlighted.
Caroline Glaude concluded the day, by summarizing the 8 accomplishments of this cross-border cooperation on rare diseases:
- Gathering of the main stakeholders in the EMR to increase expertise and cooperation;
- Analysis of patients’ needs along their pathways as well as the legal and financial framework;
- Solution proposals to improve the quality of life of patients and their families thanks to faster diagnosis and patient-centred, integrated high quality care near the place of residence;
- Raising awareness;
- Patient involvement in research on healthcare and patient empowerment;
- Catalyst for the three countries’ national plans;
- Contribution to the implementation of the European Directive 2011/24/UE on the application of patients' rights in cross-border healthcare, including the European Reference Networks;
- Development of rare diseases patient pathways in a cross-border and European context, and recommendations in line with the European and national contexts.
Click here for a selection photos from the event.
 Holistic care covers the 360° spectrum of the health, social and everyday needs of people living with a rare disease and their families. For more information on the recommendations of the EMRaDi at the European level, see the factsheet “How to get EU actions on rare diseases (RD) closer to RD patients and their relatives?”