Making it easier for patients living with rare diseases to find the right specialist 25 March 2026 By Alicia Cowley, MD, MBA

https://rarerevolutionmagazine.com/making-it-easier-for-patients-living-with-rare-diseases-to-find-the-right-specialist/ For people living with rare diseases, the longest and most difficult delays often happen before treatment ever begins. Rare disease journeys are rarely linear. Patients and caregivers may spend years navigating uncertainty, misdiagnosis and fragmented care before they ever reach the right clinician. Research suggests that, on average, it can take five or more years1 to receive an accurate rare disease diagnosis, during which time they may see six physicians2 or more. Along the way, misdiagnosis and fragmented care are well documented, often contributing to worse outcomes and eroding trust in the healthcare system.