Rare Barometer Survey on Newborn Screening for Rare diseases

Purpose of the Survey

Our partners at Eurordis have launched a new Rare Barometer survey to gather your thoughts on newborn screening for rare diseases. This survey is part of the Screen4Care Research Project and will help to understand the potential advantages and drawbacks of screening newborns for rare diseases. 

By exploring aspects such as anxiety, access to care, and the impact on family life, Eurodis aims to ensure that your views play a role in shaping the future of newborn screening.

How to Participate in the Survey

The survey is now available online in 24 languages and should take approximately 20 minutes to complete. It will remain open until July 23, 2023.

This survey is open to people living with a rare disease and their family members from around the globe. All responses are anonymous and will be securely stored, accessible only to the Rare Barometer research team.

Results and Impact

Researchers will share results with all survey participants and disseminate them to patient organisations, policymakers, and the general public. This is to drive meaningful change for the rare disease community. 

We need your assistance to ensure maximum participation from the rare disease community in this survey. The more people participate, the more powerful our collective voice will be!

About Screen4Care Research Project

This survey is part of the Screen4Care Research Project, which offers an innovative research approach to accelerate rare disease diagnosis based on two central pillars: genetic newborn screening and digital technologies.

For more information, please visit screen4care.eu

If you have any questions, you can contact the Rare Barometer team at: [email protected]