EURORDIS' Rare Barometer Survey on the Journey to Diagnosis for People Living with a Rare Disease

Screen4Care’s key partner EURORDIS has launched the Rare Barometer survey – an international survey on the journey to diagnosis for people living with a rare disease. The survey is open to people living with a rare disease and their family members from any country in the world. It is translated into 26 languages.

Obtaining a rare disease diagnosis can be a long and difficult journey with enormous consequences for the patients and their families. An early diagnosis is often crucial to prevent irreversible effects on the health of those affected.

By asking questions on the support experiences, the difficulties encountered, or on the consequences of being undiagnosed or misdiagnosed, this survey will help to better identify how to improve the diagnosis journey of people living with rare diseases.

Advances in science and technology, such as newborn screening and advanced therapies, have provided new ways to diagnose a disease, but this needs to be harmonised and strengthened across Europe.

The Rare Barometer survey will help support and generate new knowledge about the diagnosis journey from the perspective of people living with a rare disease around the globe. Based on a mixed method approach, a combination of qualitative and quantitative methods, it will provide an opportunity for those affected with a rare disease to have a strong voice, since they have been involved in every step of the survey development.

If you are part of the rare disease community, your help is needed to ensure as many people as possible complete the survey. The more people will take the survey, the stronger our voice will be. Make your voice heard and take the new global Rare Barometer survey to share your experience of seeking a diagnosis!

You can access the online survey here.

The questionnaire should take no more than 20 minutes to complete and closes on 15 June 2022.

Please also note:

• All responses are anonymous and will be kept in secured storage only accessible to the Rare Barometer research team.
• All of the information shared are completely confidential, and comply with the General Data Protection Regulation (GDPR).

You can find more information on this survey, and the Rare Barometer initiative here.