VISIMalRares – Giving rare diseases visibility across the French-Belgian border
Tekkare is one of the operators of VISIMalRares, an Interreg France-Wallonie-Vlaanderen project that brings together healthcare professionals, researchers, institutions and patient associations in France, Wallonia and Flanders. Our contribution: extending RDK Rare Disease Knowledge® to Belgium.
The project
Rare diseases do not stop at borders, but care pathways often do. VISIMalRares works to make rare diseases visible, to map and share medical expertise, and to make cross-border care pathways simpler for patients and professionals alike.
VISIMalRares is co-financed by the European Union through the Interreg France-Wallonie-Vlaanderen programme and by AVIQ, and is led by the UNMS (Solidaris).
What VISIMalRares sets out to change
Four areas of work, from public awareness to the way rare diseases are coded in medical records.
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Visibility
Share reliable information on rare diseases with the general public, patients and health professionals on both sides of the border.
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Medical care
Map medical expertise, deploy the RDK digital platform across the border, and run awareness seminars for hospitals in cross-border access zones (ZOAST) and for general practitioners.
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Data interoperability
Train doctors and clinicians on the Orphanet nomenclature (ORPHAcodes) so that rare diseases are coded consistently and can be counted, studied and followed over time.
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Medico-social support
Set up a telephone and digital support service, build a directory of respite care facilities, and simplify administrative procedures for families.
Tekkare's role: bringing RDK Rare Disease Knowledge® to Belgium
The context
Co-developed with Orphanet, RDK puts the knowledge of 6,500+ rare diseases directly in the hands of healthcare professionals, from symptom-based search to expert centre lookup. Within VISIMalRares, we are adapting it for Belgian clinicians so that a cross-border care pathway relies on the same reference knowledge on both sides of the border.
What we are building
- A Belgian version of RDK: the Orphanet knowledge base adapted to the Belgian care landscape, in the languages of the territory.
- Belgian expert centres: reference and expertise centres in Wallonia and Flanders listed alongside the French ones, so professionals can orient patients to the nearest relevant team.
- ORPHAcodes in practice: tooling and training material that make the Orphanet nomenclature usable in day-to-day clinical coding.
- Cross-border continuity: a single, shared reference tool for professionals treating patients who cross the border for care.
The consortium
VISIMalRares brings together public health institutes, health insurers, hospitals, research organisations and patient associations from France, Wallonia and Flanders.
Operators
UZ Gent / UGent, Sciensano, Solidaris, RF INSERM Orphanet, Tekkare, PARC, PLEMaRa, Alliance Maladies Rares and Maladies Rares Info Services.
Associated operators
RadiOrg, Epicura, Assurance Maladie Roubaix-Tourcoing, LARA (CHU Nancy), CHRSM and OFBS (Primary Retina).
Funders
The European Union, through the Interreg France-Wallonie-Vlaanderen programme and the European Regional Development Fund, and AVIQ (Belgium).
