RESULTS: Screening Rare Disease at Birth

EURORDIS recently published the results of their full Rare Barometer survey which can be found here. The key findings are available in multiple languages.

Key findings include:

  • 4.7 years for a confirmed diagnosis
  • 40% have NOT been referred to a Centre of Expertise
  • 25% had 8 consultations or more with healthcare professionals before their diagnosis was confirmed

EURORDIS also provided a breakdown of the responses related to rare endocrine conditions.

This entry was posted in General.