The Zebra Dx Coalition is thrilled to share its new Joint Research Poster, mapping the structural barriers within and between national healthcare systems that delay rare disease diagnosis in Europe.
Despite advances in genomics and European collaboration, people living with a rare disease still face diagnostic delays of nearly 5 years, and 90% of those delays occur within the healthcare system itself.
Drawing on existing literature, the EURORDIS Rare Barometer survey, and expert interviews, the poster identifies 7 key structural barriers along the diagnostic journey, from limited capacity in primary care to fragmented information systems and inconsistent use of genetic testing.
Because delayed diagnosis is not inevitable; it is a predictable system failure, and one we can act on!
