Ending the diagnostic odyssey: How Europe can lead the way in rare disease diagnosis March 2026

Ending the diagnostic odyssey: How Europe can lead the way in rare disease diagnosis March 2026 For many people living with rare diseases, the hardest part of their illness isn’t the treatment. It’s the wait for a diagnosis. Symptoms appear. Appointments follow. Tests are run. Specialists are consulted. And still, for what can be years, there are no answers. https://www.eurordis.org/how-europe-can-lead-way-rare-disease-diagnosis/ Despite numerous appointments, tests, and specialist consultations, many people living with a rare disease wait years without answers – a journey often referred to as the “diagnostic odyssey”. https://www.rare-diseases.eu/ This challenge will be among those explored at our European Conference on Rare Diseases and Orphan Products (ECRD 2026), taking place on 3–4 June in both Prague and online, particularly as part of the conference's Diagnosis, Research and Prevention track. Our latest article explores the scale of the diagnostic odyssey and outlines how Europe could set the global benchmark for improving the diagnostic journey.