Rare Disease Diagnosis Survey

Make your voice heard!

Complete EURORDIS survey and share your experience of seeking a diagnosis for your rare disease. It is open to people living with a rare disease and family members from any country in the world. Obtaining a diagnosis can be a long and difficult journey for both patients and their families. By asking questions on the support you had, the difficulties you encountered, or on the consequences of being undiagnosed or misdiagnosed, we will be able to better identify how to improve the diagnosis journey of people living with rare diseases.

To complete the survey: tiny.cc/survey_diagRD

Please note:

· Your contact details will be kept in secure storage, which only the research team can access.

· All of the information shared with EURORDIS is completely confidential, and complies with the General Data Protection Regulation (GDPR).

· You will be informed about the results of the survey following your participation and they will also share these results with decision-makers in order to bring about change for the rare disease community.

· This survey is available in 26 languages.

Alex - The Leukodystrophy Charity