European Cavernoma Alliance
- a network of national patient advocacy associations -
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June - Cavernoma Awareness Month
June - Cavernoma Awareness Month
Throughout June, awareness is being raised for cavernomas around the world through public lectures, lighting up of landmarks, social media campaigns and fundraising events. We encourage everyone to participate in international activities, to spread knowledge on social media, and help increase understanding of how cavernomas affect the lives of children, adults, and their families. Please use the hashtag #CavernomaAwarenessMonth!
Image from: Cavernous Malformation Canada
CAUK's Annual Conference
Saturday 21st June | 10am–4pm (BST)/11am-5pm (CET) on Zoom
Register for CAUK's Annual Conference 2025! Click here to register!
Join us for a full day of expert talks, community connection, and the latest updates. Whether you’re newly diagnosed or have lived with cavernoma for years, there’s something for everyone.
Drop in for the sessions that matter to you – and by registering, you’ll get access to the full recording afterward.
Agenda items include Cavernoma 101: Understanding Your Diagnosis, Managing the Overlooked Symptoms of Cavernoma and a supportive Community Chat session.
We’d love for you to join us – wherever you are in the world! Come for one session or the full day.
Organisations and patient groups
Organisations and patient groups
Our vision, mission, values & goals
Our vision, mission, values & goals
We envision a future:
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:
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:
Values:
Our values are to be Collaborative, Informative, High quality, Empowering, Supportive and Trustworthy.
Goals:
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
About Cavernoma
Fast Facts (Alliance to Cure Cavernous Malformation, USA)
Spinal cavernoma (Cavernoma Alliance UK)
Patient brochure (Alliance to Cure Cavernous Malformation, USA)
Information leaflets (Cavernoma Alliance UK)
CCM Care Guidelines (Alliance to Cure Cavernous Malformation, USA)
Questions to ask your doctor (Alliance to Cure Cavernous Malformation, USA)
Questions to ask your doctors (Cavernoma Alliance UK)
The science of cavernoma (Cavernoma Alliance UK)
Treatments in development (Alliance to Cure Cavernous Malformation, USA)
Webinars and videos (Alliance to Cure Cavernous Malformation, USA)
Webinars and videos (Cavernoma Alliance UK)
Bergholtz_Final_28feb.pdfInsights
Insights
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.
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