RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease.
This survey aims to identify factors that influence the process of obtaining a diagnosis and obstacles along the journey.
This is a global survey, available in 26 languages.
The ambition is to collect relevant responses at the national level and for specific disease areas, while developing an image of the diagnostic journey for our global community.
Following the survey, RDI members can access findings for their country or a disease area in a detailed digital dashboard with all results.
This is an excellent opportunity to ensure your organisation has significant data on diagnosis for the country or disease area you represent.
Deadline for the survey: 15 June