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Webinar: Survey Results on Newborn Screening

April 2024

EURORDIS and the Rare Barometer team is excited to invite you to its webinar on 30 April 2024.

During this webinar, we will present the findings from the latest Rare Barometer survey on the opinion of people living with a rare disease and their family on newborn screening. We will deep dive into the possible benefits and disadvantages of screening newborns for rare diseases.

In particular, respondents told us that:

  • More than 70% of participants wished their rare disease was diagnosed at birth, with even higher percentages among parents of children living with rare diseases or those living with paediatric rare diseases.
  • 90% of respondents support newborn screening for any rare disease if it can lead to faster diagnosis, improved recognition of associated disabilities, or prevention of harm.

Together, we will discuss those results, answer questions and tell you more about how you can access the complete survey results and use them as evidence to support your advocacy work and actions.

Register now and get your chance to access unique insights and amplify awareness of newborn screening for rare diseases!

🗓️ 30 April, 2024
2:00 CET
Watch the recording: