Within the Solve-RD project, EURORDIS-Rare Diseases Europe, 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. This task force has created an infographic setting out the patient journey to diagnosis. The infographic demonstrates the diagnostic odyssey that many people experience on a daily basis and presents existing resources from member organisations to support patients on this journey. The infographic is available in 28 languages so far! For more information, please read here and see below.

 

The Solve-RD consortium and associated European Solve-RD network, including among others six European Reference Networks, EURORDIS, Orphanet and leading European Rare Disease Clinicians and Researchers in 20 countries, call upon all European RD stakeholders, including EU Member States, the European Commission, the Council of the European Union, the general public and private organisations active in the RD field, as well as the rare disease community at large to act now to seize the current once-in-a-generation opportunity to significantly improve RD diagnosis in Europe.

 

This unique opportunity is characterized by pan-European access to diagnostic technologies in particular Whole Exome Sequencing, the just reached maturity of the European Refence Networks ecosystem, the looming opportunity to share RD data on European-wide scale within the forthcoming European Health Data Space, the upcoming RD-Partnership as well as – with Solve-RD – the availability of a scalable transnational diagnostics research platform.

Read the full critical action points here!