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.
