European Cavernoma Alliance

                                - a network of national patient advocacy associations - 

29th February is Rare Disease Day!

For Rare Disease Day, we are launching our first European Cavernoma Patient Survey!
The aim of the survey is to identify the unmet needs of cavernoma patients in Europe, and how standards of clinical care compare in different European countries.  This information will then be used to advocate for improved treatment options and better care services.

Fill  in the survey here:






The survey is anonymous and will take 15 to 20 minutes to complete. It is for cavernoma patients of all ages (children and adults) who are living in Europe and can be completed by the cavernoma patient or a parent/carer of the cavernoma patient.

If you are wondering what else you can do for Rare Disease Day - check out our "Raise awareness for Cavernoma" page! If you have any questions regarding our work, you are welcome to contact us via: . Representatives from the national patient associations meet once a month to move things forward for you!

Our vision, mission, values & goals

We envision a future:


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).


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


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:

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)

Organisations and patient groups

Kavernøs Angiom Norge (KAN)  

Kavernoomat Suomi



People with cavernoma (also known as cavernous angioma or cerebral cavernous malformations, CCM) typically arrive at emergency care with stroke-like symptoms such as paralysis and neurological deficits (e.g., vision or speech impairment). Others have epileptic seizures or serious headaches. It often takes a long time until we get the right diagnosis, because an MRI scan is needed (a CT scan is not enough!). 

In this article, Jana Bergholtz (founder of Cavernöst Angiom Sverige-CASE, Sweden and currently leading the efforts of the European Cavernoma Alliance) talks about what cavernomas are, our search for equal access across Europe, more clinical research and better person-centred care. Even though there is still no treatment except neurosurgery, we are certain there is a solution, not only for us, but many others with cavernoma, still undiagnosed. 

Read the full interview by Neha Dave

Recordings from CAUK 2023 Forum

International CAUK Annual Forum, Saturday, 24th June 2023