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Rare Barometer survey of COVID-19 in rare disease.

New survey for all rare disease patients

A new Rare Barometer survey on rare disease patients’ experience of COVID-19 is now available online.

This survey is essential for the rare disease community. It will enable EURORDIS to measure how the virus is affecting rare disease patients’ lives and give them the possibility to communicate facts and figures to decision-makers, so that people living with a rare disease are not left behind when handling this crisis.

Help strengthen the voice of rare disease

Through asking questions such as how the COVID-19 pandemic is affecting patients’ care, social care, employment situation, and mental-health, we will be able to better understand this unprecedented situation.

This survey is open to people living with a rare disease and their family members from any country in the world. It is available in 23 languages.

The more people that take the survey, the stronger the Rare Disease voice will be!

Please take the survey – closes 17 May!

The survey should take no more than 15 minutes to complete. It closes on 17 May 2020. All responses are anonymous and will be kept in secure storage only accessible to the Rare Barometer research team.

Take the Rare Barometer survey regarding the COVID-19 pandemic.