The Rare Barometer Voices is a survey tool for people living with a rare disease to provide their input and share their experience on access to health care, medical and social research, as well as early diagnosis for children.  Should you have any question while taking the survey, please contact [email protected]

From 3 December 2020 to 17 January 2021 the survey was open on the Rare Barometer Voices Platform:

Almost 4,000 responses were received in 23 languages and across 70 countries worldwide, meaning that we can be sure that the results are robust and credible.

The outcomes of the survey are summarised in several formats including:

 a factsheet summarising the key findings in your language.

- a full report in English

- a dashboard with the whole results displayed in charts and tables in each language.

Some survey findings showed that:

  • Most people living with rare diseases (79%) do not expect to be cured from their rare disease within the next 10 years, but consider it possible to improve their quality of life by accessing integrated health care and social care.
  • People living with rare diseases prefer to be treated locally but 81% of them are willing to use remote consultations to access multidisciplinary health care more easily, and 85% of them are ready to travel to another country to receive medical treatment for their rare disease.
  • 95% of people living with rare diseases support newborn screening for rare conditions.
  • 94% of patient representatives are willing to be involved in research for rare diseases as official partners or co-investigators.

The participation of thousands of people living with a rare disease has provided a valuable insight into the future of rare diseases and has helped to shape the Rare 2030 recommendations.