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:

Organisations and patient groups

Our vision, mission, values & goals

We envision a future:

• in which every cavernoma patient in Europe will easily find access to specialist doctors who are well-informed about the disease AND about ongoing research

• in which researchers, doctors and patients have joined forces to improve care and find a cure.

Mission:

As a European network of national patient advocacy organisations, it’s our mission to empower cavernoma patients in Europe by providing them with high-quality information, resources, tools and emotional support. We promote creative, yet strategic interventions and stimulate productive collaborations between researchers, patients and clinicians in order to accelerate better care, treatment options and ultimately to find a cure for cavernoma/cerebral cavernous malformations (CCM).

Values:

Our values are to be Collaborative, Informative, High quality, Empowering, Supportive and Trustworthy.

Goals:

European Cavernoma Alliance is a network of cavernoma patient advocacy groups that are working together to improve the lives and prospects of cavernoma patients (and their carers) by adopting the following goals:

• To promote the creation of CCM centres of expertise across Europe

• To promote therapeutic care pathways at European level and national emergency guidelines for better early intervention after a haemorrhage stroke caused by a cavernoma

• To stimulate research and development of treatments by increasing the communication between patients, researchers and clinicians

• To help countries without a local cavernoma patient association to form their own association

• To raise awareness of cavernoma among the medical community and public.

About Cavernoma

Fast Facts (Alliance to Cure Cavernous Malformation, USA)

Patient brochure (Alliance to Cure Cavernous Malformation, USA)

CCM Care Guidelines (Alliance to Cure Cavernous Malformation, USA)

CAUK 2023 International Forum

Rare Disease Day