PATIENT SURVEY RESULTS
(released on Cavernoma Awareness Day, 14th June 2024)

The findings of Europe’s first cavernoma patient survey have now been published, with 475 responses received from a self-selecting group of people. Key findings include that:

• 165 of the 475 respondents reported that they were first misdiagnosed;

• Respondents diagnosed within the last year waited on average 327 days for a diagnosis;

• Over half reported that their mental health was much worse or worse since their cavernoma related symptoms first started or (if asymptomatic) they were first diagnosed. 

Members of the European Cavernoma Alliance will be using these findings to call for improvements to care and support for cavernoma patients and their families. 

To support us, it’d be much appreciated if you could share this report on social media.

To view the report in full click here (pdf) or check out the images below: