A new rare barometer survey related to patient experiences in COVID 19
This research is essential for the Rare Disease Community. This will allow us to measure the way the virus affects patients with rare diseases’ life and will give the opportunity to community facts and numbers to the authorities, so that people livinig with a rare disease will not be left behind when handling this or any other future crisis. Through questions such as how the pandemic of COVID -19 affects the care of patients, the healthcare, the occupation state and mental health, we will be able to understand this unprecedented situation.
Survey will be available to people living with a rare disease and members of their families from every country of the world. It is translated in 23 languages.
https://www.sphinxonline.com/SurveyServer/s/EURORDIS75/COVID_INTERFACE/questionnaire.htm
