The future of rare diseases: Leaving no one behind!
The Rare Barometer survey on the future of rare diseases collected the opinion of people living with a rare disease and their close family members on policies that may impact their lives. It has been conducted within the Rare 2030 Foresight Study, and its results have been considered in the Rare 2030 recommendations.
This online survey was open from December 2020 to January 2021. 3,998 responses were received worldwide and 3,770 in Europe.
Results show that a holistic approach to rare diseases is needed, including research, diagnosis, treatment and care, and capitalising on new technological opportunities. Such policies need to be integrated in a new European framework on rare diseases to guide National Plans for Rare Diseases and ensure that no one living with a rare disease is left behind.
Downloads: European results
In-depth report is available in English.
Factsheet with key survey findings is availabe in 11 languages.
Dashboard with detailed survey answers is available in 23 languages.