8 June 2023
The EURORDIS Rare Barometer survey on the diagnostic odyssey of rare disease patients shows, among other things, that in Luxembourg:
- it takes 5 years on average between the appearance of first symptoms to the the confirmation of the diagnosis.
- > 60% of people with a rare disease consulted 5 or more health professionals during their journey to receive a diagnosi
- > 60% of people with a rare disaease experienced a delay in access to appropriate care/treatment following a diagnostic error.