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

Rare Barometer, a EURORDIS initiative, has launched a new survey on the opinion of people living with a rare disease on newborn screening. The survey is open to families with a rare disease from any country in the world, and is accessible in 24 languages. All responses are anonymous and will be kept in secured storage only accessible to the Rare Barometer research team.

Newborn screening is the process of systematically testing newborns just after birth for certain diseases, allowing for earlier diagnoses, better informed families, and improved follow-up healthcare. Access the survey now!

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