Rare Barometer- Eurordis: survey on newborn screening for rare diseases until the 23rd of July

Until Sunday 23 July, the Rare Barometer survey of the European Rare Diseases Organisation EURORDIS – European Rare Diseases Organisation for the screening of newborns for rare diseases, such as Cystic Fibrosis, will be open for participation.

Click on the link tiny.cc/survey_NBS_RD to participate in the survey in English.

The survey is open to all people living with a rare disease, such as Cystic Fibrosis, and their family members, regardless of the rare disease they are living with (genetic and non-genetic) and their experience with neonatal screening. By asking questions about the potential advantages and disadvantages of newborn screening for rare diseases, for example in terms of stress, access to care or adjustments to family life, Eurordis- Rare Diseases Europe will be able to advocate for a better approach to newborn screening.

The research is part of the Screen4Care Research Project.

– Participants’ contact details will be securely stored and only the research team will be allowed access to them.
– All information shared with Eurordis is strictly confidential and complies with the General Data Protection Regulation (GDPR)
– Participants will be informed of the results of the research and Eurordis will communicate these results to decision makers in order to bring about change in the rare disease community.

Everyone’s participation is important!