European Cavernoma Alliance
- a network of national patient advocacy associations -
Rare Disease Day - 28th Feb
Familial cavernoma, which are also often called familial cerebral cavernous malformations (CCM), are classified as rare disease in Europe according to Orphanet. Therefore, we are joining the Rare Disease Day celebrations and this year we are especially proud that Dr. Luisa Maria Botella Cubells receives a Black Pearl Award from Eurordis. Read an interview with her here and find out more about Rare Disease Day events close to you here!
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.
Articles
June 24th, 2019: News, Asociación Española de Cavernomas (in spanish)
Fall 2019: Angioma Alliance Fall Newsletter (page 15)
May 2020: Abstract submitted to the European Conference on Rare Diseases and Orphans Drugs (ECRD) 2020
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
Bergholtz_Final_28feb.pdfInsights
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.
Covid-19 & Cavernoma
