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Май 2024

The diagnosis odyssey of people living with a rare disease


This survey, Rare Barometer’s largest yet, gathered 13,300 responses from over 104 countries worldwide.

The survey utilised a mixed-method approach, combining qualitative and quantitative methods, to ensure that rare disease patients’ voices are heard. Patient representatives have been involved in every step of the survey development, providing valuable insights into their experiences. The findings will contribute to the development of policy recommendations aimed at improving and shortening the journey to diagnosis for people living with a rare disease.


The survey responses provide valuable insights into the Diagnosis Journey of people living with rare diseases, analysing and identifying the challenges. These detailed facts and figures which can be used to advocate for positive change with regards to access to the diagnosis difficulties people living with rare diseases can encounter.

Read our published article here !

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