New Rare Barometer survey

Make your voice heard: Take the survey and share your opinion on newborn screening for rare diseases!

The new Rare Barometer survey on your opinion on newborn screening for rare diseases is now live!

You can access the online survey here.

It should take no more than 20 minutes to complete and closes on July 9, 2023. 

Through asking questions on the possible benefits and disadvantages of screening newborns for rare diseases, for example in terms of anxiety, access to care or adjustments to family life, we will make sure that your opinion is taken into account when shaping the future of newborn screening.

This survey is open to people living with a rare disease and their family members from any country in the world. It is translated in 24 languages. All responses are anonymous and will be kept in secured storage only accessible to the Rare Barometer research team.

Overall results will be shared with everyone who responded to the survey and communicated to patient organisations, policy makers and the general public, in order to drive real change for the rare disease community.

You can find more information about the survey and about Rare Barometer here.

This survey is part of the Screen4Care Research Project. For more information, please visit

We need your help to ensure as many people as possible from the rare disease community complete the survey. The more people will take the survey, the stronger our voice will be!

Alex - The Leukodystrophy Charity