VISIMalRares, launched earlier this year, is a ground-breaking new initiative which aims to create a more effective, better coordinated, and truly patient-centred healthcare system for people living with a rare disease along the border between France and Belgium. Launched earlier this year in the framework of the Interreg Belgium-France project (co-funded by the European Union), VISIMalRares is working throughout the region to make rare diseases visible, improve access to care and create synergies between the different health system actors on both sides of the border.
As a highly collaborative project, VISIMalRares brings a variety of stakeholders together in service of these objectives. The project consortium is coordinated by UNMS – Nationaal Verbond van Socialistische Mutualiteiten (Solidaris), and includes medical, scientific and non-profit organisations from both France and Belgium, including Sciensano (Orphanet Belgium), Tekkare (co-developper of RDK - Rare Disease Knowledge), Maladies Rares Info Services, and INSERM (Orphanet France & International Coordination).
In order to better understand what sets VISIMalRares apart and what the project hopes to achieve, OrphaNews sat down with Alain Coheur, Director of European and International Affairs at Solidaris and Member of the European Economic and Social Committee, and Laurence Soussigne, Project Manager at Solidaris.
Alain Coheur, Director of European and International Affairs at Solidaris and Member of the European Economic and Social Committee
OrphaNews: What are the main objectives of VISIMalRares, and why is a cross-border approach necessary to achieve them?
VISIMalRares: Having closely followed European efforts regarding rare diseases and having already addressed the topic as part of the work of the Franco-Belgian Health Observatory, Solidaris sought to take a more concrete approach and focus on various aspects it considers important for patients with rare diseases.
Since our cross-border region faces a lack of information and weak networks between ERNs and local hospitals, this project will seek to promote knowledge sharing and develop synergies among key stakeholders in the rare disease ecosystem by focusing on a number of key areas, such as:
- Providing information to hospital professionals and primary care physicians in the Organized Zones for Access to Cross-Border Care (ZOAST)
- Developing the RDK - Rare Disease Knowledge tool in Belgium
- Initiating a discussion on the interoperability of rare disease data identified in the Franco-Belgian border region
- Providing information and guidance on medical and social topics to patients through cross-border telephone and digital support
- Facilitating travel by simplifying the formalities for cross-border care
Accessibility and knowledge sharing are essential to addressing the many challenges posed by rare diseases. However, the information needed for appropriate medical care is difficult for Belgian patients to access, even though French platforms exist and are being developed as part of France's national plan for rare diseases. Cross-border collaboration will enable the entire cross-border region to benefit from French expertise.
OrphaNews: What are the main challenges you expect to encounter, and what measures are you taking to prepare for them?
VISIMalRares: The main challenges facing this project, and cross-border projects in general, are to foster collaboration among stakeholders who, despite their proximity, live in different realities within this region due to varying national and regional regulations. It is also important to sustain this cooperation by sharing knowledge, developing synergies among stakeholders, and creating new cross-border procedures.
At the very heart of our project, we must do our best to address the issues we have identified in the cross-border area, which include poor communication, problems with the classification of individual rare diseases, and a lack of care and follow-up for patients who must travel outside their territory of residence.
OrphaNews: What implications could this project have for rare disease care in other border regions in Europe?
VISIMalRares: Since this project serves as a testing ground and lies at the intersection of European and national initiatives supporting people living with rare diseases, it is to be hoped that the added value highlighted here will inspire Europe's cross-border regions and influence the positions taken at the European level regarding European Reference Networks and, more specifically, their integration into national health care systems.
In addition to the care pathways that need to be adapted and other partnership models that could be replicated, facilitating patient mobility and ensurign the standardisation of health data represent an innovative challenge and would constitute a real step forward for patients who must cross borders to receive treatment.
OrphaNews: In the long run, what do you hope this project will accomplish for the rare disease community in the Franco-Belgian border region and the rest of Europe?
VISIMalRares: The operators have already made plans to ensure the project's continuity beyond June 2028: continuing education sessions will be organised to maintain and update healthcare professionals' knowledge, thereby ensuring the sustainability of the best practices introduced by the project.
In addition, residents of the region will directly benefit from the improvements brought about by the project in terms of access to information and patient care; and the concrete outcomes developed for professionals will be available for review and reuse by caregivers and interested individuals once the project concludes.
Finally, the project's sustainability will be ensured through the creation of a cross-border network involving public and private stakeholders in the region. At the European level, feedback will be provided to the relevant authorities. The best practices identified may be applicable to the entire European population.
Discover these and more videos about the project on VISIMalRares' LinkedIn page
Many thanks to Alain and Laurence for participating in this interview, as well as for the continued work by them and the rest of the project partners on VISIMalRares. To learn more about VISIMalRares, visit the links below.
The interview included in this article was conducted in French and has been translated for publication in OrphaNews International. The original questions and responses can be found in the article published in OrphaNews France.
