We need your help!

OIFE and EURORDIS need your opinion on future policy for people with OI and other rare diseases! If enough people with OI worldwide provide an answer to this survey, it will help us shape the future of rare disease policies regarding access to health care, medical and social research and diagnosis for people with OI and other rare conditions.

Survey is available in 23 languages through this link.

What will the survey be used for?

The plan is to use the survey results to voice the specific needs of rare disease patients within the next 10 years and to propose practical solutions to improve their daily life.

Through asking questions on your needs and preferences regarding early diagnosis of rare diseases, medical and social research, access to care and treatments, remote health care (such as e-consultations and e-prescriptions) and cross-border healthcare, EURORDIS and OIFE will be able to better understand how to shape the future of rare diseases like OI. If you have any questions while taking part in this survey, you can contact rare.barometer@eurordis.org

This survey is part of Rare 2030 foresight study. For more information please visit rare2030.eu