Rare Diseases International has partnered 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 obtaining a diagnosis and obstacles along the journey. Patients, parents, siblings or other family members, patient representatives and carers are invited to participate in the survey to collect relevant responses at the national level and for specific disease areas while developing an image of the diagnostic journey for the global community. The survey is available in 26 languages.
A webinar was held on 17 March 2022 to present the survey and is now available here.