This work package is intended to coordinate the engagement of and the dissemination of the project’s results to associated ERNs, undiagnosed disease programmes as well as to diagnostic laboratories at large by providing recommendations for a standardized molecular genetic diagnostic approach for rare genetic disorders. This WP will interconnect with WPs 1-4.
- 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 available in 16 languages!