COVID Rare Disease Patient Survey

COVID-19 Survey – Please take 10 minutes to complete the Rare Barometer survey. 


This is an opportunity to make your voice heard.


 This survey is essential for the rare disease community. It will enable measurement of how the virus is affecting rare disease patients’ lives and enable 

communication of facts and figures to decision-makers, so that people living with a rare disease are not left behind when handling the crisis


All responses are anonymous and will be kept in secure storage only accessible to the Rare Barometer research team.


More information about the survey is here


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. 


You can access the online survey here