Global Network of Neurofibromatosis Patient Organisations

Rare Disease

Survey on Newborn Screening

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

The new Rare Barometer survey on the opinion of people living with rare diseases on newborn screening is open! It is available in 24 languages. It should take no more than 20 minutes to complete and closes on July 9, 2023. You can participate through this link:

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.

The more people will take the survey, the stronger our voice will be!