Solve-RD infographic on the patient journey to diagnosis

Solve-RD - solving the unsolved rare diseases is a research project funded by the European Commission, aiming to solve large numbers of rare diseases for which a molecular cause is not known yet. To date, the Solve-RD Project is analysing 8,463 datasets (8,152 whole exome sequencing and 311 whole genome sequencing datasets) including datasets from 5,205 individuals from 4,862 families. The project has already solved 130 rare disease cases for which a molecular cause was not previously known.

Within the Solve-RD project, EURORDIS initiated the Community Engagement Task Force (CETF - a multi-stakeholder community of patients, scientists and clinicians to support the needs of undiagnosed and recently diagnosed patients and leave a legacy of a strengthened undiagnosed community.

The EURORDIS-led CETF has created an infographic setting out the patient journey to diagnosis. The infographic demonstrates the diagnostic odyssey many people experience on a daily basis and presents existing resources from CETF member organisations to support patients on this journey. The infographic is now also available in French, German, Dutch, Turkish, Czech, Spanish, Italian, Portuguese and Swedish: