If you are affected by a rare disease or caring for someone affected by a rare disease then please complete the Rare Barometer survey on the future of rare diseases – available in 23 languages.
Complete the Rare Barometer survey on the future of rare diseases – available in 23 languages.
EURORDIS (alliance of patient organisations representing 944 rare disease patient organisations) and partners want to better understand how to shape the future of rare diseases. The aim is to raise awareness of the specific needs of rare disease patients within the next 10 years and to propose practical solutions to improve daily living.
Survey questions ask about your needs and preferences regarding early diagnosis of rare diseases, medical and social research, access to care and treatments, remote health care and cross-border healthcare.
The survey closes on 4 January 2021 and should take no longer than 15 minutes to complete.
Spread the word and encourage your members and networks to make their voice heard and respond to the survey. Use the communication materials on this page: eurordis.org/rare2030surveytoolkitThis survey is part of Rare 2030 foresight study – visit rare2030.eu for more information.
If you have any questions while taking part in this survey, please contact firstname.lastname@example.org.