Eurordis - Rare Disease Europe

This Rare Barometer survey, the largest yet, gathered 13,300 responses from over 104 countries worldwide, and more than 10,500 responses in Europe.

The survey’s findings reveal an average diagnostic journey of nearly five years, with marked variations depending on demographic and geographic factors. Notably, women and young patients face longer diagnostic times, underscoring a pressing need for tailored approaches to improve diagnosis rates, reduce waiting times, and tackle systemic inequities.