Major survey reveals lengthy diagnostic delays for rare disease patients May 2024

https://www.eurordis.org/survey-reveals-lengthy-diagnostic-delays/ EURORDIS-Rare Diseases Europe has released findings from an extensive Rare Barometer survey highlighting the prolonged and inequitable diagnostic journeys faced by rare disease patients right across Europe. Conducted between 17 March and 15 June 2022, the landmark Rare Barometer survey encompassed responses from over 10,000 patients from 42 countries, representing 1,675 rare diseases. In the area of diagnosis, EURORDIS has outlined the a range of policy recommendations for the EU’s incoming policymakers, including promoting equal access to screening and diagnosis services, strengthening collaborative networks, enhancing data systems and recognising undiagnosed patients.